Competence Assessment in Dementia

W
Competence Assessment
in Dementia
Edited by Gabriela Stoppe

On behalf of the European
Dementia Consensus Network
SpringerWienNewYork
Prof. Dr. med. Gabriela Stoppe
Universitäre Psychiatrische Kliniken, Basel, Schweiz
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PREFACE
Dementia and related disorders affect the suffer- minimal standards of care for people with dementia1,
ers’ ability to perform activities of daily living and the improvement of access to diagnosis and treat-
to make appropriate decisions about various issues ment2, ethical issues related to research in dementia3,
relevant to their life. While there is no disagreement the problems related to severe dementia, stigma and
about these facts there is little clarity and even less social exclusion of people with dementia, assessment
consensus about the ways in which competence to of outcome of treatment of dementia and the assess-
make decisions should be assessed in daily practice ment of competence of people with dementia. The
– nor is there agreement about the levels of compe- work to develop consensus on the latter subject lead,
tence at which it is in the best interest of the people inter alia to the production of this volume.
with dementia to have a guardian and receive legal In its work the EDCON Steering committee se-
protection against abuse and other mistreatment. lects areas on which it will concentrate and desig-
In daily clinical practice there is a large heterogene- nates a coordinator for the work on each of those. The
ity in procedures used for the assessment of compe- coordinator then undertakes to assemble the existing
tency in dementia across Europe, and we are sure evidence and works with a group of expert advisors to
that in a considerable number of patients probably is assess and summarize it, usually in the form of a sci-
not served best with the methods applied in current entific paper or a book. Professor G. Stoppe was thus
practice. This highlights the need for a thorough dis- invited to coordinate the work on the development
cussion of this topic in a European perspective. of the consensus of the competence of persons with
The European Dementia Consensus Group dementia. The consensus statement that the group
(EDCON) was established by the Madariaga Founda- proposed to the Steering committee after its review
tion in Brussels to identify such areas of controversy of the evidence and its discussions is given on page 11
and disagreement related to dementia and to de- and the working papers produced in the course of the
velop consensus about them among all concerned: a work on this area are contained in this volume.
further task of the group is to seek ways to promote
the best possible care based on such a consensus. The 1
Burns A on behalf of EDCON (Ed) Standards in dementia
group is multidisciplinary and serves as a steering care. Taylor & Francis, London and New York 2005
mechanism used to achieve these goals. In its work 2
Waldemar G, Phung KTT, Burns A, Georges J, Hansen FR,
it relies on a group of expert advisors in European Iliffe S, Marking C, Olde Rikkert M, Selmes J, Stoppe G, Sar-
countries and on the support of non-governmental torius N (2007) Access to diagnostic evaluation and treat-
organizations with which it has established working ment for dementia in Europe. Int J Geriatr Psychiatry 22:
47–54
relations. 3
Olde Rikkert M, van der Vorm A, Burns A, Dekkers W, Rob-
Until now the EDCON has worked on the devel-
ert P, Sartorius N, Selmes J, Stoppe G, Vernooij-Dassen M,
opment of a consensus about a variety of areas of pos- Waldemar G, on behalf of the European Dementia Consen-
sible controversy including the disclosure of the di- sus Network (EDCON): Consensus statement on genetic
agnosis of dementia to patients and their carers, the research in dementia (submitted)
Preface
It is my pleasant duty to thank, on behalf of sembled in this volume. Our special thanks go to Pro-
EDCON, all the experts who have worked with Pro- fessor Stoppe who has guided the group’s work and
fessor Stoppe and who had produced the papers as- edited this volume.
Prof. N. Sartorius, MD, PhD

Chairman of the EDCON Steering Committee
Members of the EDCON Steering Committee

Prof. Alistair Burns, Manchester (UK)
Prof. Marcel Olde Rikkert, Nijmegen (NL)
Prof. Philippe Robert, Nice (F)
Prof. Norman Sartorius, Geneva (CH) (Chair)
Dr. Jacques Selmès, Madrid (E) (Secretary)
Prof. Gabriela Stoppe, Basel (CH)
Prof. Gunhild Waldemar, Copenhagen (DK)
VI
CONTENTS
Introduction Chapter 6
Why is competence assessment important? Are legal systems in Europe fit
Development of the EDCON for the dementia challenge?
consensus statement 1 Approach of the Council of Europe 61
Lienhard Maeck and Gabriela Stoppe Nicole Kerschen
EDCON-Consensus: Assessment Chapter 7

of Competence 11 Testamentary and financial competence
issues in dementia 71
Chapter 1 Konstantinos N. Fountoulakis and
Neuropsychological assessment 13 Katerina Despos
Pasquale Calabrese
Chapter 8
Chapter 2 Assessment of competency and
Brain structures involved in dementia 25 advance directives 77
Matthias Brand and Hans J. Markowitsch Julian C. Hughes
Chapter 3 Chapter 9
Medical factors interfering with Informed consent in dementia research 85
competence in dementia 35 Anco vd Vorm and Marcel GM Olde Rikkert
Maria E. Soto and Bruno Vellas
Chapter 10
Chapter 4 Assessment of fitness to drive, possession
Drugs that affect competence 41 of professional drivers’ license, possession
Conor O’Luanaigh and Brian Lawlor of firearms, and pilot’s certificate in clients
with dementing conditions 93
Chapter 5 Kurt Johansson and Catarina Lundberg
Who decides who decides?
Ethical perspectives on capacity and Chapter 11
decision-making 51 Practice of Competence Assessment
Deborah Bowman in Dementia: Austria 103
Johannes Wancata and Josef Marksteiner
Contents
Chapter 12 Chapter 21
Practice of Competence Assessment Practice of Competence Assessment in
in Dementia: Denmark 107 Dementia: Poland 141
Dorthe Vennemose Buss and Gunhild Waldemar Andrzej Kiejna, Joanna Rymaszewska, and
Tomasz Hadryś
Chapter 13
Practice of Competence Assessment in Chapter 22
Dementia: Finland 109 Practice of Competence Assessment in
Raimo Sulkava Dementia: Portugal 147
Horácio Firmino, Pedro Silva Carvalho, and
Chapter 14 Joaquim Cerejeira
Practice of Competence Assessment in
Dementia: France 113 Chapter 23
Marie Bouyssy, Emilie Legay, and Vincent Camus Practice of Competence Assessment
in Dementia: Romania 151
Chapter 15 Nicoleta Tătaru
Practice of Competence Assessment in
Chapter 24
Dementia: Germany 117
Practice of Competence Assessment
Volker Lipp
in Dementia: Spain 155
Fernando Marquez and Raimundo Mateos
Chapter 16
Practice of Competence Assessment Chapter 25
in Dementia: Greece 121 Practice of Competence Assessment
Magda Tsolaki and Eleni Tsantali in Dementia: Sweden 161
Karin Sparring Björkstén
Chapter 17
in Dementia: Ireland 125 Practice of Competence Assessment
Mairead Bartley and Desmond O’Neill in Dementia: Switzerland 165
Marc Graf and Eva Krebs-Roubicek
Chapter 18
in Dementia: Italy 129 Practice of Competence Assessment
Rosa Liperoti and Roberto Bernabei in Dementia: Czech Republic 169
Iva Holmerová, Martina Rokosová, Božena
Chapter 19 Jurašková, Hana Vaňková, Hana Čvančarová,
Practice of Competence Assessment Pavla Karmelitová, and Eva Provazníková
in Dementia: The Netherlands 131
Marcel G.M. Olde Rikkert Chapter 28
Practice of Competence Assessment
Chapter 20 in Dementia: UK 175
Practice of Competence Assessment Sarmishtha Bhattacharyya and Alistair Burns
in Dementia: Norway 137
Knut Engedal and Øyvind Kirkevold List of Contributors 181
VIII
Introduction
WHY IS COMPETENCE ASSESSMENT IMPORTANT?

DEVELOPMENT OF THE EDCON CONSENSUS STATEMENT
Lienhard Maeck and Gabriela Stoppe
1 Preface pean tendency is particularly obvious: according to a

study initiated by the German “Institut der deutschen
The following chapter serves to underline the impor- Wirtschaft” (IW) in 2004, mainly due to a low birth
tance of developing consensus on the competence rate, the Estonian population will decrease about
of the elderly, especially the demented population. 57% by the year 2050, the Hungarian and Czechian
Briefly said, the percentage of the elderly in the pop- about 25%, and Polish still roughly 15% (IW 2004). Be-
ulation is increasing in modern societies due to the cause of this transnational demographic change the
increased life expectancy and reduced birth rates. In percentage as well as the absolute number of 60 years
consequence an age-associated disease as dementia old and older Europeans will raise from today’s 21%
is going to double its prevalence within the next 20 (151.8 million) to 34% (225.3 million) in the coming
years. Family and household structures change with 44 years. As life expectancy of citizens 60 years of age
more single households, more relationships on dis- in the same time period will also increase from 18 to
tance and shorter lifespan-partnerships. Individual 22 years (UN 2004), typically age-associated diseases
rights and autonomy are increasingly and generally like dementia will become a more and more impor-
acknowledged as having high priority, maybe also tant social as well as economic factor.
because there seems to be more tolerance to and
higher variety of attitudes and beliefs. Last but not
least, medical progress has allowed to analyse mental 3 The impact of dementia and its diagnosis
processes with a variety of methods and thus opened and treatment
opportunities for adequate multi-modal assessments
and understanding. Worldwide, prevalence rates of dementia are sup-
posed to double every 20 years to 81.1 million by 2040.
As for the situation in Europe, likewise, the number of
2 Increasing numbers of elderly about 5.3 million demented people in the year 2000 is
supposed to clearly surmount 10 million within the
In the year 2006, Europe’s demographic development next four decades (Ferri et al., 2005). Though treat-
is characterized by one of the lowest birth rates world- ment options still remain limited and future need for
wide and a continuous increase in life expectancy. In care is generally not to avoid, with the introduction
1995, on an average, a European old age pensioner of cholinesterase inhibitors (ChEIs) in the mid-90s,
faced about four labour forces. According to a United progression of Alzheimer’s disease (DAT) as the most
Nations’ (UN) prognosis, this ratio will change to 1:2 prevalent primary neurodegenerative dementia can
by the year 2050 [UN 2004]. In the predominantly east be slowed down (Burns et al., 2006). In addition non-
European countries which joined the European Un- pharmacological treatment options as well as caregiv-
ion (EU) in the year 2004, the result of this paneuro- er support models have been developed and evaluated
Introduction: L. Maeck and G. Stoppe
(Sitzer et al., 2006; Spector et al., 2003; Quayhagen et In addition families have become smaller and
al., 2000). Moreover, vascular dementia (VD), the next- many elderly people live distant from their grown-up
common cause of dementia, has become a promising children (Lang, 2001). Family care, still the most fre-
target for primary and secondary prevention (Wolf and quent form of ambulatory support for the demented,
Gertz, 2004; Hebert et al., 2000). Overall more elderly will become less granted in the future. This challeng-
persons as well as better treatment options will lead to es societal structures and forms of intra- and inter-
an increasing number of mildly to moderately affected generational help are under discussion.
demented patients who, among others, will have to
make decisions on important issues.
5 Legal frameworks
4 Changing family structures Another political trend is the tribute to and appre-
ciation of individual rights, especially patient rights.
This becomes even more important as family struc- This applies to the former paternalistic medical sys-
tures are heavily changing throughout Europe. While tem, and at the moment, all societies discuss more or
some decades ago a human being used to have one less intensively, e.g. matters of advance directives or
spouse and one occupation throughout his or her life, living wills and the problem of informed consent. Af-
modern lifes seem to be less continuous and require ter the Council of Europe had agreed on a Convention
more flexibility and “life long learning”. Technologi- for the protection of human rights and fundamental
cal achievements provide more mobility and security freedoms in November 1950, it defined principles and
on the one hand. On the other hand, however, their legal standards in the “Convention on human rights
use is often complicated and requires much effort for and biomedicine” during the 1990’s (see Chap. 9). This
the users to be up to date. A common example might Convention is the first legally binding international
be the technology of mobile phones. The use of the text designed to preserve the human being against
internet has only recently become a matter of interest the misuse of biological and medical advances.
of the elderly population, too. Elderly persons in gen- As important as legal structures are, much im-
eral are more “conservative” and the neuropsychol- portance must also be given to the interaction be-
ogy of aging is characterized by a loss of “fluid” com- tween the (demented) patient and the community,
ponents like processing speed, attention and learning and the physicians and lawyers especially. The in-
and a stability of knowledge and experience (Craik formation and counseling of a patient is not only in-
and Bialystok, 2006). However, also the regulation of fluenced by knowledge, but also by communication
affects and emotion is changing. Positive affects are skills, attitudes and moral respect for the patient. And
more prevalent than negative ones and quality of life on the patient’s side, trust in the physician as well as
is usually higher in older compared to younger age awareness of the disease, play a major role. And de-
groups (Pinquart and Sorensen, 2001; Staudinger et mentia itself might influence the decisions, too. In a
al., 2003; Diehl et al., 1996). Since life experience and small study in fifty outpatients incapable of complet-
the psychological status as well as cognitive func- ing advance directives, these were significantly more
tioning are important for decision making in general, likely to opt for life-sustaining intervention than cog-
there is no reason to assume an impaired function- nitively intact controls (Fazel et al., 2000)
ing of the elderly person in general. However, demen- Studies could show, that many physicians exhib-
tia and other mental disorders like, e.g. depression it negative attitudes (ageism) against their elderly pa-
threat the self-determination of the individuum. This tients (Flick et al., 2005; Uncapher and Arean, 2000).
becomes more important in a society which changes Especially with regard to the management of the de-
more rapidly than before. mented patients nihilism can often be found to affect
2
Why is competence assessment important? Development of the EDCON consensus statement
detection rates and management. Thus, early diag- al of the driving licence this would lead to avoiding
nosis of dementia is far from being reached in pri- diagnosis in many people. Moreover, dementia does
mary care (Turner et al., 2004; Van Hout et al., 2000; not imply incompetence for all purposes per se. The
Cody et al., 2002; Waldemar et al., 2007; Stoppe et al., functional approach however, is time-consuming and
2007). Applying various methods, studies revealed in theory, everyone should have a capacity-assess-
detection rates of 12–33% in mild and of 34–73% in ment each time they make a decision. In addition, le-
more advanced dementia (summarised in Stoppe et gal standards for competence vary between jurisdic-
al., 2007). Also, being sceptical on the impact on out- tions and even prominent commission reports and
come, many hesitate to get into a diagnostic work-up. scholars vary in their descriptions of constructs. Last
This attitude is often shared by patients, caregivers but not least, there is uncertainty about the threshold
and the public (Gely-Nargeot et al., 2003; Connell et between competent/incompetent. The latter applies
al., 2004; Waldorff et al., 2003; Iliffe et al., 2003). Early especially to psychometric testing. That might be one
diagnosis however is a prerequisite to allow an indi- reason that still experts’ categorical judgements are
viduum to decide what is necessary facing the usu- widely used as gold standards. Empirical studies re-
ally progressive course of dementia. vealed however mostly low inter-expert agreements
with kappa values between 0.6 and 0.8 at best (Etch-
ells et al., 1999; Molloy et al., 1996). As to be expected,
6 The problem of competence in general interrater agreement can be trained and considerably
increased (Marson et al., 1997; 2000).
But, what means assessment of competence? In liter- Apart from the following chapters of this book,
ature, there is some consensus to regard competence which serve to give deeper insight into the methodo-
or competency in a juridical sense by addressing to logical aspects of competence assessment for vari-
a persons’ legal qualification to perform an act; the ous purposes and to the situation in many European
frequently synonymously used term capacity, how- countries, the following paragraphs serve to under-
ever, rather describes a medical status as judged by line the need for operational criteria to determine
a health care professional. We have agreed to use the competence. This will be done with focus on typical
term competence in the broadest sense including ca- core issues which depend on a “qualified” decision
pacity, performance, ability and competency. from or with respect to a demented person.
Differentiating capable from incapable subjects
remains an issue at stake for both, physicians and le-
gal experts. To adequately cope with that challenge, an 7 Focus on testamentary competence
evidence-based assessment of competence will be of
growing importance. However, throughout the litera- The elderly generation is in possession of consider-
ture, measurement of decision-making abilities and able material assets and cash value determining
decisional competence is highly heterogeneous (Kim legacies of corresponding height. In Germany, as-
et al., 2002). The international medicolegal literature sets worth about 1.17 billion € have been left during
usually refers to an operational model of competence 1990 and 2000; a total of 2.25 billion € will have been
defined by Applebaum and Grisso (1988). According transmitted during the following decade (BBE 1999).
to this, competence is defined as the ability to un- As testamentary disposals are of immense micro-
derstand, appreciate, reason and to express a choice. and macroeconomic as well of familiar importance,
Competence might be judged categorically or dimen- cognitive requirements with respect to the testator
sionally. The categorical approach has to be rejected deserve attention. Involving higher frontal/execu-
in case of dementing conditions. Not only that if di- tive cerebral functions the term testamentary capac-
agnosis of dementia would implicate the withdraw- ity refers to a persons’ ability to execute a valid will.
3
In Europe, competency to contract and make a will given. Even in non-demented adults studies show
are typically regulated in national specific civil codes. that a considerable number of patients does not re-
There is a general conformance that, first of all, testa- call the information even hours later (Rosique et al.,
mentary capacity implies consciousness of making 2006).
a will, i.e., a basic understanding of a wills’ nature. It In case a patient cannot give informed consent,
is proposed, that it should also assume a knowledge mostly a court or judge is legitimated to install a
about the extent of property to be left, about the legal guardianship. Competencies of a guard are usually
heirs, and about how the property should be divided regulated in the individual national Civil Codes. They
(Shulman et al., 2005; Regan et al., 1997). Is it also may be limited to special areas of interest, i.e., financ-
necessary to know about the exact value of the assets es, residence, or consent to diagnostic and treatment.
to be distributed (Arie, 1996)? In some countries, families may decide for their inca-
Psychometric approaches seem suitable to ad- pacitated relatives without formal legitimisation by a
equately assess complex competencies like testa- judge or court. Which model is best for the demented
mentary capacity. It has been shown, that declines people?
in semantic knowledge, short-term verbal recall, and A special problem is the informed consent for
simple reasoning ability predict physicians’ judg- research purposes. The Declaration of Helsinki for
ments on the three most difficult and clinically most research ethics is applied in almost all countries. Re-
relevant legal states (appreciating consequences and search on persons under legal guardianship implies
providing rational reasons of a treatment choice, informed consent of the legal representative in ac-
understanding the treatment situation and choices) cordance with national law. There are debates as to
(Earnst et al., 2000); however, it is unclear, whether whether and under which conditions research in de-
these capacities are of significant relevance regarding mented patients might be done, even when no direct
the claimed direct impact on a given will (Vollmann profit for the patient might arise. An example might
et al., 2004). be to take cerebrospinal fluid on multiple occasions
just to analyse the change of biochemical parameters
in relation to specific symptoms of dementia. From
8 Focus on informed consent the results of this research future treatments might
arise. This would mean that not this individual pa-
Except in the case of an emergency, in Europe, physi- tient, however the group of the demented patients
cians are generally obliged to obtain an informed con- might have some benefit. This so-called group-spe-
sent (patients’ agreement) to any intervention like in- cific benefit as reason for applying research to inca-
stitutionalisation, diagnostics, treatment, and partic- pacitated persons has to be discussed.
ipation in research. It generally is required to tell the This is a frequent problem in research. According
patient anything that would substantially affect his to a study from Italy up to 70% of patients with mild
or her decision. Typically, such information includes and moderate dementia of Alzheimer’s disease eligi-
the nature and purpose, its risks, consequences, and ble for taking part in a drug trial, were incompetent
any alternatives, if existing. The information has to (Pucci et al., 2001). Authors argue, that patients with
be given in a way which is adapted to the abilities of DAT not necessarily have to be declared as being in-
patient. For the acting of the doctor it is decisive what capacitated making a decision whether or not to take
is in the patients’ best interest (Arie, 1996). part in a clinical study (Karlawish et al., 2002). How-
Usually, three basic components of informed ever, today it depends on the individual researcher
consent are defined: being informed, voluntary, and and his ethical standards to judge whether a patient
competent. It is of questionable relevance whether is able to consent to a scientific study or not. It is
and how long a person might recall the information therefore not surprising that a recent transeuropean
4
survey on the practice of obtaining approval from Other relevant questions to be answered are
medical research committees regarding the ICTUS those, whether the living will must exist in written
study determined a very heterogeneous assessment form, whether there should be a register (central, na-
of informed consent. It also showed great differences tional…) and whether the directive should fade out
in study evaluation by the corresponding ethical com- if it is not renewed in time course. It is commonly
mittees demonstrating need for future harmonization suggested that directives with regard to future treat-
(Olde Rikkert et al., 2005). Since research is needed to ment should be reported to the patient’s health care
develop treatments and service delivery, the impor- provider, relatives and other close persons. Generally
tant protection of patients’ individual rights should it has to be considered, that any advance directive in
not lead to exclusion of demented patients and their a situation the patient has not predicted is unlikely
caregivers from research per se. But how can we find to remain in force when acting against the presumed
a solution that balances the interests in the patients interest. Especially in demented people, this might
best interest? be of importance in a positive sense, as this disease
could be a less fatal experience both for the patient
and their caregivers than generally assumed in public
9 Focus on advance directive opinion.
Advance directives, also called living wills, anticipate

situations when a person becomes incapable to de- 10 Focus on driving competence
cide on its own. Exclusively within the framework of
existing legislation, they comprise distinct instruc- In later life, with respect to the maintenance of mental
tions about any desired prospective treatment and and physical health, social contacts and quality of life,
care. The person concerned should have a basic un- driving capacity may become a critical factor (Marot-
derstanding of a living will’s nature. This should in- toli et al., 1997). However, perhaps as a result of the
clude the realisation of a fundamental problem that, rapidly increasing number of older drivers in the de-
due to the impossibility of accurately predicting fu- veloped world, many European countries introduced
ture illness, a precise knowledge of coming situations obligatory health checks in the elderly. This might be
in which the living will might apply, is impossible. surprising, as, on the one hand, old-aged drivers play
Moreover, the concerned person should be free from a subordinated role in causing road accidents; rather,
any abnormal state of mind, which might have a di- in modern traffic, they are at increased risk of being
rect impact on the understanding of a living will and the victim in the traffic, also as pedestrians, bicyclists
its potential consequences. This means that ideally, or train users (Cerelli, 1989). Since many of the elderly
the person who defines his or her advance directive, reduce driving voluntarily, it is also debatable wheth-
is at that moment free of any mental disorder which er the investments in screening justify the earning of
might affect the directive. It has been shown, that, e.g. a reduced accident rate, if it occurs at all.
depression changes the preferences for life sustaining As Johannson and Lundberg point out in the re-
therapies (Blank et al., 2001). Taking into account the spective chapter, many aspects should be taken into
high prevalence of depression in the elderly and the account: neuropsychological functions like atten-
underdetection of the disease there should be a con- tional functions and visual processing, visual acuity,
siderable number of persons who express a living will insight into disease and the presence of somatic dis-
of at least questionable validity (Charney et al., 2003). orders and drug treatment.
In addition the attitudes of the family and the society While many regulations exist with regard to health
might play a role. In the elderly an altruistic motiva- checks of the elderly in Europe, there is not much em-
tion of decisions has been described (Lang, 2000). pirical research supporting this. And security aspects
5
also apply to pilots licenses for planes and boats. Do assumed. This affects the content of health checks
countries with regulations for driving checks in the which may consist of a “general”, in particular cases
elderly also check for the use and the possession of poorly operationalized, check-ups or self-reporting
firearms? This is especially true for a country like Swit- questionnaires as well as neurological and psych-
zerland where many military weapons are in private iatric examinations. Would it make sense to foresee
households. While there are no obligatory checks with a regular screening for signs of dementia? Is there a
regard to this, those exist for driving licence. consensus regarding age at entry, and following time
Nevertheless, European Council Directive 91/439/ intervals for health check-ups? And how heteroge-
EEC constitutes the rationale for national criteria re- neous are the regulations applied with regard to the
garding medical fitness, which are supposed to be obligation of reporting any illness to the authorities,
required for driving (White and O’Neill, 2000). This when potentially affecting driving skills?
directive is not age-related and primarily focused on
somatic diseases. Moreover, with regard to the proc-
ess of driving skills’ assessment in the European eld-
erly, a significant transnational heterogeneity can be
Table 1. Questionnaire used for the e-mail survey (for details see text)
• Testamentary capacity
– Is there an obligatory assessment of mental competence when making a testament?
– Who assesses testamentary capacity? Is the individual professional trained for dementia?
– How is testamentary capacity documented?
• Informed consent
– Is an informed consent obligatory for Institutionalisation/Diagnosis and treatment/Participation in research
– How is informed consent managed in people with dementia?
– How is decided, whether a formal attorney (guardianship) is necessary?
– Does the procedure differ with regard to informed consent for (please specify)
Institutionalisation/Diagnosis and treatment/Participation in research
– Is it possible to arrange formal guardianship only for certain areas of competence (e.g., finances, treatment…)?
– Can a spouse or child decide for the patient without a formal assignation as guardian concerning the following areas?
If yes, please specify: Institutionalisation/Diagnosis and treatment/Participation in research
• Advance directives
– Are advance directives used?
– How and where are they documented?
– How long are they valid (is, e.g., renewal necessary?)
• Driving licence
– Is there a regular health check required for the elderly to keep their driving licence? If yes,…
– What does it include (obligation)?
– Are there formal requirements available?
– At what age do mandatory checks begin and at what intervals are they carried out?
– Who performs these health examinations and checks?
– Are physicians obliged to inform authorities about the presence of conditions interfering with driving?
• Have any formal steps been taken to include questionnaires or other screening tools for dementia
in any of the following competency assessments?
– Testamentary capacity
– Informed consent
– Advance directives
– Driving licence
6
11 The situation in Europe Burns A, O’Brien J, on behalf of the BAP Dementia Consensus
Group (2006) Clinical practice with anti-dementia drugs: a
For the situation in Europe, national legal systems consensus statement from British Association for Psycho-
demonstrate relevant differences, considering for ex- pharmacology. J Psychopharmacol 20: 732–55
ample the role of the individual and the family. This Charney DS, Reynolds CF, Lewis L, Lebowitz BD, Sunderland
T, Alexopoulos GS, Blazer DG, Katz IR, Meyer BS, Arean PA,
was the reason for the EDCON group to get a first
Borson S, Brown C, Bruce ML, Callahan CM, Charlson ME,
impression on the situation by performing a survey. Conwell Y, Cuthbert BN, Devanand DP, Gibson MJ, Gottlieb
Dementia and legal experts from seventeen European GL, Krishnan KR, Laden SK, Lyketsos CG, Mulsant BH, Nie-
countries agreed to fill out a questionnaire, which derehe G, Olin JT, Oslin DW, Peason J, Persky T, Pollock BG,
was sent to them via e-mail (Denmark, Norway, Fin- Raetzman S, Reynolds M, Salzman C, Schulz R, Schwenk
land, Germany, Netherlands, Belgium, Great Britain, TL, Scolnick E, Unützer J, Weissman J, Young RC (2003)
Ireland, Switzerland, Austria, France, Spain, Italy, Depression and Bipolar Support Alliance Consensus State-
ment on the unmet needs in diagnosis and treatment of
Portugal, Tschechia, Poland, Romania). The results
mood disorders in late life. Arch Gen Psychiatry 60: 664–
were discussed in an expert group at a conference in
72
Basel. This group consisted of two legal experts, one Cerelli E (1989) Older drivers: The age factor in traffic safety.
forensic psychiatrist, two old age psychiatrists and DOTHS 807 402, NHTSA Technical Report (February)
one neuropsychologist. The survey and the confer- Cody M, Beck C, Shue VM, Pope S (2002) Reported practices of
ence took place in 2004. The results and a review of primary care physicians in the diagnosis and management
the literature served as basis for the EDCON consen- of dementia. Aging Mental Health 6: 72–76
Connell CM, Boise L, Stuckey JC, Holmes SB, Hudson ML
sus. The questionnaire is given in Table 1.
(2004) Attitudes towards the diagnosis of disclosure of de-
Overall the following chapters will show, that
mentia among family caregivers and primary care physi-
competence cannot be easily defined, but clearly is cians. Gerontologist 44: 500–07
a multidimensional construct with important clini- Craik FI, Bialystok E (2006) Cognition through the lifespan:
cal, legal, ethical, social, and policy aspects. Clarity mechanisms of change. Trends Cogn Sci 10: 131–38
in competence assessment is founded on strong con- Diehl M, Coyle N, Labouvie-Vief G (1996) Age and sex differ-
ceptual foundations, on empirically grounded assess- ences in strategies of coping and defense across the life-
ment instruments and clinical practices, on appre- span. Psychol Aging 11: 127–39
Earnst KS, Marson DC, Harrell LE (2000) Cognitive models of
ciation of the clinical and legal contexts in which the
physicians’ legal standard and personal judgments of com-
assessments take place, and on ongoing study and petency in patients with Alzheimer’s disease. J Am Geriatr
critique of these assessments and practices. Com- Soc 48: 919–27
petence assessment is an interdisciplinary endeavor Etchells E, Darzins P, Silberfeld M, Singer PA, McKenny J,
that calls for creative collaborative, and cross-disci- Naglie G, Katz M, Guyatt GH, Molloy DW, Strang D (1999)
plinary approaches (Marsden and Moye, 2007). Assessment of patient capacity to consent to treatment.
J Gen Intern Med 14: 27–34
Fazel S, Hope T, Jacoby R (2000) Effect of cognitive impair-
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Health Care 21: 142–47
9
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EDCON-CONSENSUS: ASSESSMENT OF COMPETENCE
Being aware that there are many other terms avail- Recognizing that competence may vary over time
able like capacity or competence, and in different situations and that the lack of compe-
tence for a particular purpose does not imply that the
Defining the term “competence” in the legal as well person is lacking competence to perform adequately
as the clinical meaning of having the ability to under- with respect to other purposes,
stand, appreciate, reason and decide on specific, im-
portant issues of one’s daily life, EDCON recommends that the following consensus
statement should be adopted as the basis for the as-
Aware of the increasing emphasis on the assessment sessment of competence in European countries:
of competence of elderly persons possibly affected by
dementia, (1) The assessment of competence should be used
to enhance the welfare of people with dementia
Cognizant of the fact that the assessment of compe- and should serve to provide help and shelter to
tence can have significant consequences for the hu- those whose competence is reduced and auton-
man rights and care of persons affected by dementia, omy to those where competence is maintained.
(2) The diagnosis of dementia should not be taken
Informed about the differences that exist between le- to automatically imply a lack of competence.
gal provisions and requirements as well as between (3) Competence should be assessed with respect to
competence assessment procedures in different specific purposes. It should not be assumed that
countries of Europe, the lack of competence to perform with regard
to a particular purpose means that there is a lack
Concerned by the fact that the current differences in of competence to perform with regards to other
the manner of assessment of competence as well as of purposes.
disclosure of diagnosis may expose the elderly person (4) Competence should be assessed repeatedly at
with dementia and society to harmful consequences intervals defined by the purpose of the assess-
of an inappropriate assessment of competence, ment.
(5) The assessment of competence requires spe-
Aware also of the fact that the evidence about the cial skills and should be performed by persons
validity of different methods for the assessment of who can use currently available methods in an
competence is scarce and that the existing methods optimal manner.
have to be used with great care to avoid erroneous
judgments,
Chapter 1
NEUROPSYCHOLOGICAL ASSESSMENT
Pasquale Calabrese
1 Introduction clinical assessment procedures. Neuropsychological

tests in patients with clinically diagnosed dementia
The understanding of aging processes is becoming of various etiology have shown quite variable mental
increasingly relevant since the average age and lon- deterioration. While in some forms of dementia there
gevity of the population is increasing. Normal aging are some cognitive domains, which seem to decline
is associated with some changes in intellectual func- very early in the course of the disease, some other
tioning. While the so-called cristallized intellectual abilities are more robust to neurodegeneration.
abilities (e.g., vocabulary, reasoning) are relatively
preserved, there is a significant decline in cognitive
functions belonging to the “fluid” domains (e.g., per- 2 The role of neuropsychological assessment
ceptual speed, memory load). Nevertheless, effects of in clinical practice
plasticity can also be observed in aging. The latter is
subserved by environmental stimulation. Along with Together with psychiatrists and/or neurologists, neu-
the aging process there is an increase in prevalence of ropsychologists play an important role in the detec-
the dementia syndromes. In many patients dementia tion and evaluation of the changes in cognitive func-
is preannounced by some partial intellectual decline, tioning that frequently occur in the later decades of
mostly in the memory domain. This syndrome is de- life.
scribed as mild cognitive impairment (MCI) and re- Clinical neuropsychologists are uniquely equip-
presents in some cases a prodromal phase of demen- ped by training, expertise, and the use of specialized
tia, since a high proportion of MCI patients convert neuropsychological tests to assess changes in memo-
to dementia within a year. Unfortunately, most clini- ry and cognitive functioning and to distinguish nor-
cians do not screen for cognitive problems in their mal changes from early signs of pathology. Although
practice unless they receive complaints from either strenuous efforts are being exerted to identify the
the patients or their relatives. physiological causes of dementia, there are still no
Alzheimer’s disease is one of the most prevailing conclusive biological markers short of autopsy for the
forms of dementia in advanced age. The clinical di- most common forms of dementia, including Alzheim-
agnosis is based on physical examination, laboratory er’s disease. Neuropsychological evaluation and cog-
analysis, brain-imaging and mental examination. nitive testing remain the most effective differential
The mental status is assessed by neuropsychological diagnostic methods in discriminating pathophysi-
tests. Assessment of dementia and age-related cog- ological dementia from age-related cognitive decline,
nitive decline in clinical practice is a core activity of cognitive difficulties that are depression-related, and
the specialty of clinical neuropsychology. The practi- other related disorders.
cal implication of psychometric testing, with respect
to competency, is demonstrated by describing some
domain-specific dysfunctions and then presenting
Chapter 1: P. Calabrese
3 The concept of dementia account for these progressive deficits. The Diagnostic
and Statistical Manual of Mental Disorders, 4th edi-
Though many contributions from histopathology tion, of the American Psychiatric Association (1994)
to neurochemistry and neurogenetics of Alzhei- also outlines diagnostic criteria for dementia of the
mer’s disease (AD) are progressively contributing to a Alzheimer’s type that are generally consistent with
deeper understanding of its underlying causes and the NINCDS-ADRDA criteria. DSM-IV also provides
specificities it should nevertheless be kept in mind diagnostic criteria for vascular dementia, as well as
that the clinical impression which leads to the clas- dementia due to other general medical conditions
sification of a patient of either suffering from demen- including HIV disease, head trauma, Parkinson’s dis-
tia or from another psychiatric condition is based ease, Huntington’s disease, Pick’s disease, Creutzfeldt-
on cognitive-behavioral features which themselves Jakob disease, and other general medical conditions
are highly influenced by psychological and also eco- and etiologies. New causes and varieties of dementia
logical variables. In this context ecological aspects continue to be elucidated (e.g., dementia with Lewy
include those environmental factors which an indi- bodies; McKeith et al., 1996) and diagnostic criteria
vidual is confronted daily with, and which have to be for the dementing disorders continue to be refined
managed successfully to live independently in a soci- (e.g., International Classification of Diseases-10 and
ety which is getting more and more complex. Aspects subsequent revisions).
of socio-ecological functioning have been recognized
as capital components in the definition of wellbeing,
health and disease by the World Health Organization 4 The concept of Mild Cognitive Impairment
(WHO). They now are inherent criteria in defining (MCI)
dementia and have been formalized and adopted by
several classification systems (e.g. ICD), by the Ameri- Some older individuals have memory problems as
can Psychiatric Association in the DSM IV and by a well as difficulties in other cognitive domains. These
joint committee of the National Institute of Neuro- deficits may be identified by neuropsychological test-
logical and Communicative Disorders and Stroke ing and they may be greater than those typical of nor-
(NINCDS) and also by the Alzheimer’s Disease and mal aging, but not so severe as to support a diagnosis
Related Disorders Association (ADRDA) (McKhann of dementia. While some of these persons go on to
et al., 1984). develop frank dementia some other patients do not.
Alzheimer’s disease (AD) is the major cause for Up to the nineties there was not yet a clear consensus
dementia in later life (Evans et al., 1989). The most regarding nosology. Proposed nomenclatures includ-
widely accepted diagnostic criteria for probable AD ed mild neurocognitive disorder, late-life forgetful-
are those offered by the National Institute of Neuro- ness, possible dementia, incipient dementia, benign
logical and Communicative Disorders and Stroke senescent forgetfulness, senescent forgetfulness, and
and by the Alzheimer’s Disease and Related Disor- provisional dementia. There have been numerous at-
ders Association (NINCDS-ADRDA; McKhann et tempts to define the transitional stage between nor-
al., 1984). These criteria include the presence of de- mal aging and pathology. While terms such as incipi-
mentia established by clinical examination and con- ent dementia, provisional dementia, and mild cogni-
firmed by neuropsychological testing. The demen- tive impairment refer to persons who are somewhat
tia is described as involving multiple, progressive more severely impaired and have a relatively greater
cognitive deficits in older persons in the absence of likelihood of eventually becoming demented (Flicker
disturbances of consciousness, of psychoactive sub- et al., 1991), terms such as benign senescent forget-
stances, or any other medical, neurological, or psy- fulness or late-life forgetfulness refer to persons with
chiatric conditions that might in and of themselves milder cognitive difficulties relative to their age peers
14
Neuropsychological assessment
who are less likely to go on to develop dementia. At pacity measure (The Financial Capacity Instrument
the end of the nineties the term mild cognitive im- [FCI]) consisting of 18 financial ability tests (tasks),
pairment (MCI) was proposed to a nosological en- 9 domains (activities), and 2 total scores to assess fi-
tity to characterize individuals with subtle cognitive nancial capacity in MCI patients and patients with
deficits, which are not sufficient to warrant dementia mild AD along with a battery of neuropsychological
(Petersen et al., 1997). The original criteria defined by tests sensitive to dementia. Relative to controls, the
Petersen and coworkers included the psychometric MCI group demonstrated impairments in a variety of
substantiation of subjective memory complaints in cognitive domains. Moreover, MCI participants dem-
absence of other cognitive disorders and repercus- onstrated impairments in FCI domains of conceptual
sions on daily life as well as normal general cognitive knowledge, cash transactions, bank statement man-
functioning and absence of dementia (Petersen et al., agement, and bill payment, and in overall financial
1997). While the concept of MCI has made it possible capacity. Although these impairments were defined
to identify individuals at high risk for dementia it has as mild and only applied to a subset of patients with
become clear that MCI is a heterogeneous clinical MCI they might have a significant impact in higher
entity comprising a)individuals with isolated mem- order activities of daily life such as financial and tes-
ory problems (amnestic MCI) which are thought to tamentary capacity.
progress preferentially to Alzheimer’s Disease (AD),
b) individuals with slight cognitive problems in mul-
tiple domains (multiple-domain MCI) which may 6 Normal aging
progress mainly into AD or vascular dementia and c)
subjects with isolated cognitive impairments other Although some healthy aging persons maintain very
than memory (single-domain, non-memory-MCI) high cognitive performance levels throughout life,
which may show progression to dementia types other most older people will experience a decline in cer-
than AD. Moreover, the heterogeneity refers also to tain cognitive abilities. This decline is usually not
the trajectory of progression as well as to etiological pathological, but rather parallels a number of com-
factors. Although more recently, the Petersen criteria mon decreases in physiological function that occur
have been revised by the European Working Group of in conjunction with normal developmental proc-
the European Consortium on AD (Portet et al., 2006) esses. Thus, cognitive decline appears to be a nor-
and a three-step diagnostic procedure (syndrome-di- mal consequence of aging in humans (e.g., Craik and
agnosis, identification of subtype, etiological specifi- Salthouse, 1992). This cross-cultural phenomenon is
cation) has been proposed, there are still some un- most pronounced in speed and flexibility variables
resolved issues, e.g. pharmacological treatment of (socalled fluid intellectual properties) and is found
“converters”, preventive strategies etc. in virtually all mammalian species. The nosological
category of Age-Associated Memory Impairment was
proposed by a National Institute of Mental Health
5 MCI and competency (NIMH) work group to describe older persons with
objective memory declines relative to their younger
With reference to competency, there is some evidence years, but cognitive functioning that is normal rela-
that MCI-patients should be carefully assessed, since tive to their age peers (Crook et al., 1986). This defini-
their overall legal capacity might be compromised al- tion requires explicit operational and psychometric
ready at a stage where potential converters do still not criteria to assist in identifying these persons. The
fulfil criteria of dementia. This has been shown by a more recent term, Age-Consistent Memory Decline,
study of Griffiths and colleagues (Griffith et al., 2003). has been proposed as being a less pejorative label and
The authors used a standardized psychometric ca- to emphasize that these are normal developmental
15
changes (Crook, 1993; Larrabee, 1996), are not patho- 8 History taking and neuropsychology
physiological (Smith et al., 1991), and rarely progress
to overt dementia (Youngjohn and Crook, 1993). The Careful history taking is the most important initial
DSM-IV (1994) has codified the diagnostic classifi- step within the diagnostic process. The time of onset
cation of Age-Related Cognitive Decline. While this and nature and rate of the course of the difficulties
nomenclature has the advantage of not limiting the may unmask experienced problems in everyday life
focus solely to memory, it lacks the operational defi- and may also provide information important to dif-
nitions and explicit psychometric criteria of age-asso- ferential diagnosis. The clinical interview provides an
ciated memory impairment. For some older persons, opportunity to assess for the presence of deleterious
however, declines go beyond what may be consid- side effects of medication, substance abuse, previous
ered “normal” and are relentlessly progressive. These head injury, or other medical, neurological, or psychi-
more malignant forms of cognitive deterioration are atric history relevant to diagnosis. Obtaining a fam-
caused by a variety of neuropathological conditions ily history of dementia is also relevant. Furthermore,
and dementing diseases. it is important, when possible, to obtain behavioral
descriptions and subjective estimations of cognitive
performance from collateral sources such as family
7 Cognition and competence members and friends. This information can be ob-
tained either through clinical interview or through
To meet ecological challenges efficiently, human be- memory complaint questionnaires. It is important
ings are equipped with a sophisticated and highly in- to be particularly alert to discordance between self
terwoven network of mental functions which may be and family reports. When formal scales are used,
summarized under the umbrella term of cognition. discrepancies between self and family reports can
From the evolutionary point of view, these abilities be quantified (Feher et al., 1994; Zelinski et al., 1990).
may be regarded as the product of progressively re- Depressive symptoms in elderly persons can mimic
fined complementary adaptations caused by selec- the effects of dementia (Kaszniak and Christenson,
tion pressure, which is exerted by ecological circum- 1994). Psychomotor retardation and decreased moti-
stances on human species. In psychological terms vation can result in nondemented persons appearing
this well organized and orchestrated abilities are op- to have pathophysiologically determined cognitive
erationalized as intelligent behavior, meaning that a disturbances in both day-to-day functioning and on
cognitive system is able to cope with this whole range formal neuropsychological testing. Depressive mood
of demands successfully. If, on the other hand, the can also cause nondemented persons to over-report
cognitive system, which once has worked successful- the severity of cognitive disturbance. Consequently,
ly, gradually fails to accomplish all these tasks within it is important to perform a careful assessment for
a certain range of accuracy, as it happens in Alzhei- depression when evaluating for dementia and age-re-
mer’s disease, then dementia may be diagnosed. As lated cognitive decline. Depression can already be as-
already mentioned, the boundary between normal sessed during history taking, so that the clinician can
aging and early cognitive impairment is not sharply obtain information regarding the client’s body lan-
delineated and dementia represents just an extreme guage and affective display. Formal mood scales (e.g.,
on a continuum between cognitive well-being and Beck et al., 1961; Yesavage et al., 1983) can also play an
malfunctioning. Thus, by establishing a diagnosis of important role in assessing for depression and have
dementia, reference must be made to neuropsycho- the advantages of quantifying and facilitating the
logical assessment procedures relying on established assessment of changes in mood over time. Sociocul-
norms. tural factors might also cause some older persons to
underreport or overestimate depressive symptoms. It
16
might be emphasized that depression and dementia between different cognitive functions. Second, even
are not mutually exclusive. Depression and dementia within a specific domain (e.g., memory) the dec-
and/or age-related cognitive decline frequently coex- remental trajectories may vary. Third, composite
ist in the same person. Moreover, depression can also scores, which stem from intermingling subtests with
be a feature of certain subcortical dementing condi- highly discrepant slopes may obscure disease activ-
tions, such as Parkinson’s disease (Cummings and ity. As a consequence, the findings of Locascio et al.
Benson, 1992; Youngjohn et al., 1992). point to the difficulty in stratifying subjects with AD
for group studies on the basis of specific cognitive
tests. Thus, psychometric tests should be standard-
9 Cognitive testing ized, reliable, valid, and have normative data directly
referable to the older population. Discriminant, con-
The use of neuropsychological tests may represent vergent, and/or ecological validity should all be con-
the most important and unique contribution of clini- sidered in selecting tests.
cal neuropsychologists to the assessment of demen- If these methodological pitfalls are not suffi-
tia and age-related cognitive decline. Neuropsycho- ciently considered, then their influence may obscure
logical tests are standardized procedures which must possible differences which per se might give valuable
be adopted in a uniform, reproducible manner to allow informations, e.g. concerning the efficacy of pharma-
inferences with respect to the target behavior on the ba- cological and/or behavioral treatment (e.g., masking
sis of a comparison between individual or group data of potentially good responder subgroups in pharma-
with a population of reference. Once used in this spirit, cological treatment studies).
they can be useful as screening procedures, as con- There are many screening tests as well as com-
firming some hypothesized features and also for stag- prehensive approaches that are useful for these eval-
ing as well as monitoring a disease course. Since in uations. Valuable sources and descriptions are given
the clinical context it is common practice to use one in Neuropsychological Assessment (3rd edn.) (Lezak,
and the same collection of cognitive tests to measure 1995), and A Compendium of Neuropsychological Tests
onset, severity and progression of AD, clinicians must (Spreen and Strauss, 1991). A useful compendium
also be alert to the fact that different neuropsychologi- of scales widely used in old age psychiatry is given
cal tests have different sensitivities which qualify them by Burns, Lawlor and Craig (1999) and while brief
either as detecting, staging or tracking tools. The study mental status examinations and screening instru-
of Locascio and coworkers (Locascio et al., 1995) is a ments are not adequate for diagnosis in most cases,
case in point. Their study aimed to identify specific they should at least be adopted where a comprehen-
cognitive deficits of AD and to separate such tests sive assessment is not possible due to time and staff
that qualify for detecting AD from normal controls limitation. Besides the Mini-Mental-Status-Examina-
and to distinguish these tests from other neuropsy- tion (Folstein et al., 1975) which is widely used as a
chological measures which are of help in either stag- brief and common clinical reference there are some
ing or tracking AD. Although, as a general result, AD more recent developments (e.g., DemTect – Kalbe et
patients performed significantly poorer in all cogni- al., 2004) which avoid ceiling effects in earlier stages.
tive domains it was shown that while delayed recall Wherever possible comprehensive neuropsychologi-
measures showed a sharp deterioration to an early cal evaluations for dementia and age-related cogni-
floor other tests like semantic fluency and immedi- tive decline should be done, including tests or assess-
ate recognition showed a more linear decline across ments of a range of multiple cognitive domains, typi-
time. cally memory, attention, perceptual and motor skills,
The clinical implications of this study are many- language, visuospatial abilities, problem solving, and
fold. First, there is no linearity of cognitive decline executive functions. However, in more advanced stag-
17
es of dementia a comprehensive neuropsychological adequate age-adjusted norms. It is also important to

test battery may not be required but instead, more note that comparison of an individual’s test perform-
caregiver-related measures (proxy-questionnaires) ance against even age-adjusted norms can be mis-
should be adopted. leading if the individual’s earlier abilities fell outside
of the population curve. Until recently, the relative
lack of older adult norms posed a problem for clini-
10 The estimation of premorbid abilitites cians, but better and larger older adult standardiza-
tion samples are now available for many commonly
When assessing for cognitive declines in older per- used clinical tests. However, normative database for
sons it is important to have baseline test data from very old persons and for diverse linguistic and ethnic
earlier years against which current performance minorities as well as some other special populations
could be compared. Since this informations are often (illiterates, low-IQ as well as high-IQ performers) is
missing, premorbid abilities have to be estimated by still scarce.
taking into consideration socioeconomic status, edu-
cational level, occupational history, and client and
family reports which can be converted into standard 11 Domain-specific characteristics of
formulas (e.g., Barona et al., 1984; Blair and Spreen, cognitive decline
1989). However, clinical judgment can be an impor-
tant part of this process. There are a number of sys- In the following, we will present some characteristic
tematic biases in human judgment that may lead to features of early cognitive alterations in the domains
inaccurate clinical estimates of premorbid function of attention, memory, language visouconstruction and
(Kareken, 1997). Although various techniques have flexibility as they become evident in neuropsychologi-
been used to estimate cognitive abilities in earlier cal tests. A wealth of studies have shown that cognitive
years one should nevertheless be aware, that most domains, as well as their respective subfunctions are
measures of current cognitive functioning are age- not uniformly affected and also vary in their dynamics
sensitive and thus can be affected by already ongo- of decrement (Becker et al., 1988; Locascio et al., 1995;
ing dementia (Larrabee et al., 1985; Storandt et al., Rebok et al., 1990; Welsh et al., 1992). Thus, domain-
1995). specific testing should be a promising approach.
Once a person has been tested, these data can
serve as a baseline against which to measure future
changes in cognitive functions. Magnitudes and rates 12 Attention
of cognitive change, as well as response to treatment,
can also be determined by follow-up testing. In most Attention is most commonly used to refer to selec-
cases a half-year follow-up interval is adequate for tivity of processing. Neuropsychological studies with
monitoring changes in cognitive performance, un- brain injured as well as healthy individuals have
less the client, family, or other health care profes- shown that attention may be further subdivided into
sional report a more rapid decline, emergence of new specific domains that differ in their functions as well
symptoms, or changes in life circumstances. Interim as in their anatomical basis (Posner and Petersen,
follow-ups including proxy-interviews not involving 1990). Clinical studies sustain the view that different
formal testing may also be useful in many cases. brain lesions may lead to distinct attentional impair-
Because declines in average levels of perform- ments. Furthermore, more recent studies indicate an
ance with age are observed on some tests, it is im- early decrement of attentional capacity in dementia
portant that tests selected for use in the evaluation (Perry and Hodges, 2000). Neurocognitive models dis-
of dementia and age-related cognitive decline have tinguish between the following attentional domains:
18
(1) alertness (with tonic and phasic components) (3) Is the patient able to keep pace with the amount
(2) selective or focused attention and speed of incoming information (mental
(3) divided attention speed)?
(4) vigilance or sustained attention.
In a next step within the information processing stream
While sustained attention refers to the ability to focus there is a need to combine this incoming information
attention over an extended period of time the ability with preexisting data (memory) and also to translate
to concentrate on some single aspects is referred as the input into a meaningful message (language) if this
selective attention. Distributing attentional abilities message should enable one to react adequately. Fi-
by focusing on different aspects simultaneously is nally the incoming and outgoing information must be
called divided attention. manipulated and monitored internally to disentangle
The concept of Alertness is of fundamental im- some ambiguities or to revise some steps in order to
portance, since it enables us to react to external de- avoid processing errors (cognitive flexibility).
mands promptly and timely. The ability to enhance
the attentional capacity within milliseconds is de-
fined as phasic alertness. This ability allows the in- 13 Memory
dividual to anticipate reactions towards incoming
information. Its functional integrity is expressed via While memory traditionally was fractionated along a
reduced reaction-time latencies in simple stimulus- chronological axis into short-term (STM) and long-
reaction-tasks under warning conditions. It is also term memory (LTM), more actual subdivisions dif-
mirrored in altered EEG-patterns (eg., so called readi- ferentiate memory along its qualitative domains.
ness potentials or “Bereitschaftspotentiale”) which Memory abilities may vary greatly among the differ-
themselves reflect preparatory actions in the expec- ent manifestations of dementia.
tation of a stimulus. Thus, measuring alertness reac- Although there are some controversies among
tions is not only of help in a detection of a general the content-based subdivisions of memory the dis-
CNS affecion, but it is also an excellent method for tinction between explicit and implicit learning and
monitoring cholinergic drug-effects which are sup- memory domains is generally accepted. Explicit (or
posed to exert a strong influence on attentional func- declarative) memory can be further subdivided into
tions. a semantic (general knowledge of the world stored
In everyday conditions, competency, as the clini- in a “mental lexicon”) and an episodic (event-related,
cal meaning of having the ability to plan and follow a autobiographical-bound) domain. Whereas standard
meaningful action is warranted by basic attentional recall and recognition memory tasks demand explicit
capacities, since they form basis of the receptive, in- and conscious recollection of facts and events, impli-
tegrative and expressive functioning within a highly cit learning may occur without awareness. Declarative
structured cognitive network. Consequently, within learning can be directly measured by explicitly asking
the framework of formal exploration, especially when the subject for the amount of items he or she is able
there is concern about competency, clinicians have to remember. Implicit learning and memory efficacy
to consider the following questions: is measured indirectly as a change in the processing
rate and/or amount of a stimulus due to prior expo-
(1) Is the patient able to to maintain a certain level sure to that stimulus (“priming”). As a general rule,
of arousal (vigilance)? perceptual and repetition priming and also sensori-
(2) Is the patient able to focus long enough his men- motor skill learning abilities are widely unaffected in
tal stamina towards some specific aspects of ex- most cortical Dementias (Gabrieli, 1996; Gabrieli et
ternal inputs (concentration)? al., 1993) but can be severely compromised in subcor-
19
tical processes (e.g., Parkinson’s Disease Dementia, nipulate incoming information internally before pro-
PDD). It is a common feature of dementia that the im- ducing an output. Thus, in clinical practice it may be
mediate memory span is intact at initial steps while observed that the same patient who easily repeated
the working memory component, which is necessary 5 or even 6 digits forward will not be able to achieve
to retrieve consolidated information during monitor- the same number of items when performing the exer-
ing the incoming data stream to be stored long-term, cise in a backward condition. Inverted span-measure
is defective. This feature reflects early changes in ex- procedures may help to reveal early working memory
ecutive capacity and becomes even more pronounced deficits and clinicians should carefully look for dis-
in some variants of frontotemporal dementia (FTD). crepancies in the performance between forward and
Moreover, and with reference to the assessment backward conditions of span-tests. It is evident that
of competence it is of practical importance to consid- individual with a reduced working-memory load may
er that while some subentities of FTD may be charac- exert comprehension difficulties which may prevent
terized by semantic failures (i.e., difficulties in nam- them to take proper decisions since this process may
ing and identifying the proper significance of a given require to compare concurring alternatives.
word) some other forms may have intact memory The verbal learning ability is also most compro-
functions in their early stages but may have problems mised in dementia. While empirical data support the
in monitoring their mnestic capacity (i.e., telling what idea that recall as well as recognition are defective
came first, which facts have already been mentioned in AD some qualitative aspects of a learning slope
etc.) due to a pronounced frontal-executive deficit. which can be derived from list-learning-paradigms,
like serial position effects, acquisition and forgetting
rates, intrusion errors and number of false positives
14 Assessment of explicit memory may be of substantial help in detecting pathological
cognitive decline as well as in the differentiation be-
One possibility to examine verbal-auditory and visu- tween subgroups of patients from presumably differ-
ospatial short-term memory capacity is given by the ent entities.
digit-span and block-span tasks respectively. While in
the digit-span task the examinee is asked to repeat
a certain sequence of digits spoken by the exam- 15 Linguistic functions
iner in the same order, in the block-span task he or
she is asked to point to a certain sequence of blocks Patients with AD have preserved orthographic and
shown by the examiner. This is done by the help of a also syntactic processing abilities (Glosser et al.,
block-board (Corsi’s block-board). In both tasks the 1998; Waters et al., 1998). While these aspects of spo-
patients are confronted with progressively longer ken language are long preserved in AD, the pragmatic
strings of items they have to touch sequentially. The aspects (which govern conversational rules) and also
inverted version of the same test procedures where the semantic language processing abilities are found
the patient has to begin with the last string or block to be altered early in the course of the disease. The
and to continue the string of presentation backwards latter seem to be related to regional hypometabolism
is suited to tap working memory capacity since the of the inferior temporal gyrus and inferior parietal
subject has to perform a dual task mentally (keeping lobule of the dominant hemisphere (Hirono et al.,
in mind the presented string of items while inverting 1998). One clinical hallmark of early AD at the lan-
the same string “in the mind’s eye”). guage level is the violation of communicative rules
It can be shown that even mildly demented pa- concerning clearness, saliency, thoughness and truth
tients fail to accomplish this task because it involves (Grice, 1975). This might lead to serious practical dif-
more working memory capacity, i.e., the ability to ma- ficulties in the context of testimonies and other le-
20
gal affairs. Therefore, when exploring AD patients in transcode written numbers presented one at a time
clinical interviews, clinicians should be alert for com- into an alphabetic script. Several study groups found
municative violations through phonologically and this function to be strongly impaired in AD-patients.
grammatically correct use of words and sentences When confronted with this task, AD-patients tend to
(Fromm and Holland, 1989). Although these aspects intrude numbers into the written word. One possible
are of practical relevance in showing high validity, un- explanation is that to write in alphabetic script re-
fortunately to date, the relevant scientific database is quires the subject to suppress the more automatized
too small and there are only a few systematic linguis- behavior of using idiographic script by copying the
tic analyses and formalized clinical practicable scor- numbers. This ability per se requires an intact ( fron-
ing systems to assess pragmatic language functions tal guided) shifting strategy enabling the subject to
in dementia (e.g., Romero et al., 1995). switch between controlled and automatized behav-
Other language-related tests also reveal that cat- ior.
egory-based word-retrieval is progressively compro-
mised in AD (Kessler et al., 1998). This is shown in
controlled oral word association tasks as they require 17 Visuoconstructive abilities
verbal organizational abilities, which are subserved
by the frontal lobes. AD patients are found to be more Deficits in constructional abilities including drawing
compromised in semantic than in letter fluency. It are often early signs of degenerative dementia and
is hypothesized that this finding is due to a partial mostly pronounced in Lewy-Body-Dementia (Hirono
degradation of the semantic structural-knowledge et al., 2005). Since it has been demonstrated that AD-
system while letter fluency is accomplished by the patients with a poor performance on drawing tasks
help of phonologic and lexical cues. Nevertheless, let- more often wander and become lost, this ability is im-
ter fluency seems to be highly correlated with disease portant to investigate under practical aspects (Hend-
progression (Kessler et al., 1998). Clinically, word flu- erson et al., 1989).
ency, is tested by using the “word fluency test” which In a longitudinal study of Kirk and Kertesz (1991)
is part of many dementia screenings. This test meas- where spontaneous drawing abilities of 38 AD patients
ures the spontaneous production of words beginning were followed up for up to 3 years it could be demon-
with a given letter (F, A, S) under time constraints. strated that drawings of AD-patients displayed fewer
In normal individuals there is only little decline with angles, impaired perspective and spatial relations,
age. There are extensive norms available for this pro- simplifications and overall impairment compared to
cedure (Spreen and Strauss, 1991). Since this test those of control subjects. Interestingly these deficits
shows a steady linear decline across time for patients were relatively independent of language or memory
with AD (Locascio et al., 1995) it is best being used for impairment measured over the same period.
staging dementia severity. A characteristic finding in this domain is the
so called “closing-in phenomenon”. This expressive-
visuoconstructive dysfunction is characterized by
16 Transcoding abilities the tendency of subjects when asked to reproduce
a drawing to copy as near as possible to the model
Numeric abilities are of great practical importance or even into it. In a study conducted by Gainotti and
and play an important role in testamentary and fi- coworkers the authors found that this phenomenon
nancial decision making. is found significantly more often in AD-patients than
A possibility to screen for this function is of- in subjects with vascular dementia (Gainotti, 1992).
fered by the transcoding-paradigm introduced by
Tegner and Nybäck in 1990. Subjects are asked to
21
18 Conclusion Howard, A. Burns, eds) Treatment and care in old age psy-
chiatry, pp. 95–111. Wrightson Biomedical Publishing, Lon-
Dementias are clinically characterized by behavio- don
Crook TH, Bartus RT, Ferris SH, Whitehouse P, Cohen GD, Ger-
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shon S (1986) Age-associated memory impairment: pro-
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24
Chapter 2
BRAIN STRUCTURES INVOLVED IN DEMENTIA
Matthias Brand and Hans J. Markowitsch
1 Introduction 2 Structural and functional brain correlates of

dementias
Neurodegenerative dementias are linked to severe
damage to various brain structures and intercon- 2.1 Primary brain correlates of Alzheimer’s
necting fibres. These structural abnormalities are ac- disease
companied by additional functional brain changes.
Both structural and functional alterations are found Alzheimer’s disease (AD) is often seen as a “hippo-
extensively in various brain regions including corti- campal dementia” (Ball et al., 1985; see also the re-
cal and sub-cortical areas. However, dementia-type view by Mosconi, 2005). Indeed, there is convincing
specific changes were described in the last years. For evidence that structures of the medial temporal lobes
instance, dementia of the Alzheimer type is primarily are primarily affected in patients with AD, including
associated with damage in the hippocampal region the hippocampal formation, the entorhinal and the
while brain pathology in fronto-temporal dementia is perirhinal cortices as well as the parahippocampal
centred around the prefrontal cortex and the lateral gyrus (e.g., Kantarci and Jack, 2003; Ezekiel et al.,
temporal lobe. In recent years, investigations using 2004; a meta-analysis of studies that used structural
structural and functional imaging techniques expand- and functional brain imaging techniques in AD can
ed our knowledge on brain correlates of dementia-type be found in Zakzanis et al., 2003). As a result of the
specific behavioural changes. These findings are also critical function of the hippocampus and surround-
relevant for the diagnosis and differential diagno- ing structures of the medial temporal lobe in mem-
sis of dementias. In this chapter, we will summarise ory processes (see Markowitsch, 1995; Markowitsch,
common findings concerning structural and func- 2000; Brand and Markowitsch, 2003; Piefke et al.,
tional brain abnormalities in patients with demen- 2003) damage to these structures in AD is considered
tias of different aetiology. We will focus on the most to be the neural correlate of the cardinal symptom
prominent type of dementia, the Alzheimer’s disease of memory impairments (e.g., Mortimer et al., 2004).
(AD). In addition, we will briefly describe the neu- Within the structures of the medial temporal lobe
ral correlates of dementia with Lewy bodies (DLB), mentioned, the typical neuropathological changes
fronto-temporal lobe degeneration (FTLD) including associated with AD can be found even in the absence
fronto-temporal dementia, semantic dementia and of clinical symptoms (Braak and Braak, 1991). The
primary progressive aphasia as well as the most com- histopathological signs are neurofibrillary tangles
mon findings in vascular dementias (VD). (NFT) and beta-amyloid plaques (AP) accompanied
by reductions of synaptic connections and neural
loss leading to a general brain volume loss (atrophy).
NFTs are believed to interfere with cytoskeleton in-
tegrity and probably result in neural dysfunction and
neuronal death. NFTs can also be found in healthy
Chapter 2: M. Brand and H.J. Markowitsch
aging brains, however, their density is significantly can also occur at the early stages, but is less prominent
higher in patients with AD (Braak and Braak, 1996). compared to the medial temporal lobe abnormalities
NFTs are primarily located in limbic and paralimbic mentioned (Zakzanis et al., 2003). In addition, there
regions, such as the hippocampus, the nucleus basa- is consistent evidence that the amygdala and the su-
lis of Meynert within the basal forebrain, the amygda- perior temporal gyrus are severely affected at an early
la and entorhinal cortex, and are linked to memory stage of AD (e.g., Galton et al., 2001; Basso et al., 2006).
dysfunctions in both patients with AD (e.g., Mortimer In the course of the disease, volume loss can be
et al., 2004) as well as individuals with mild cognitive found in widespread brain regions including vari-
impairment (Petersen et al., 2006). In the course of ous sub-cortical structures beyond the characteris-
AD, high densities of NFTs are also found in neocorti- tic cortical atrophy. Concerning sub-cortical lesions,
cal areas, such as the parietal and the frontal lobes, parts of the basal ganglia (i.e., putamen, globus pal-
and are related to severity of dementia (Braak and lidus and caudate nucleus) are affected (Zakzanis et
Braak, 1991; Braak and Braak, 1996). The distribution al., 2003). However, effects on basal ganglia are less
of APs shows a high inter-individual variability. In ad- severe than the volume loss of neocortical regions.
dition, the density of APs is less intensively associated Tissue loss in parts of the thalamus was also found in
with cognitive decline than that of NFTs (Mesulam, patients with Alzheimer’s disease, although this pa-
1999). Recent review articles also emphasise addi- thology is not very specific as it is also found in other
tional pathological signs in AD, such as changes of neurodegenerative disorders.
the density and the excitatory level of glutaminergic The volume loss of the medial temporal lobe,
NMDA-receptors (Wenk, 2006) and a higher level of especially damage to the hippocampal formation as
oxidative stress (Harman, 2006). Some authors also mentioned above, is the most reliable measure in
propose that the appearance of NFTs and APs is not differentiating between patients with AD at an early
closely related to developing dementia and that they stage and healthy individuals (e.g., Wang et al., 2003).
are rather the consequence than the causation of the However, a recent study by van de Pol et al. (2005)
neurodegenerative process in AD. In addition, NFTs principally confirmed smaller hippocampal volume
and APs can be present relatively independently from in patients with AD compared to control subjects, al-
each other (Armstrong, 2006). though the authors reported no differences between
Medial temporal volume loss is found consist- patients with AD and patients with fronto-temporal
ently in patients with AD and a disease duration of dementia (FTD). Comparable results concerning
less than four years (since clinical diagnosis) indicat- hippocampal atrophy in patients with FTD were re-
ing that these changes occur at an early stage in the ported previously (Frisoni et al., 1999; Boccardi et al.,
course of symptom progression. Beyond these char- 2003; but see also the study by Ibach et al., 2004, men-
acteristic lesions, patients with AD also suffer from tioned in Sect. 2.3). In addition, there is also evidence
frontal lobe damage primarily affecting the dorsola- for hippocampal damage in patients with semantic
teral and orbitofrontal section, the basal forebrain dementia comparable with that found in AD (Galton
(Teipel et al., 2005) and the temporo-frontal junction et al., 2001). Therefore, hippocampal volume loss is
area (Salamon et al., 2004). The neocortical lesions less specific for AD than previously assumed, howev-
are considered the primary correlates of cognitive er, it is still the most prominent and most frequently
impairment beyond memory disturbances, such as described pathology which is correlated with mem-
language problems, deficits in problem solving and ory decline in patients with AD. In addition, a recent
other executive functions which can severely affect study by Apostolova et al. (2006) indicated that those
activities of everyday life and also co-vary with symp- patients with mild cognitive impairment and smaller
toms of anosognosia (Kalbe et al., 2005; Marshall et hippocampal volume have a higher risk to convert to
al., 2006; Salmon et al., 2006). Frontal lobe damage AD than patients with mild cognitive impairment and
26
Dementia and brain structures
normal hippocampal size. Although their samples of metabolic changes in parietal, temporal and frontal
patients were small and the time between the baseline brain regions (Salmon et al., 2005). There are also var-
examination and the follow-up was only three years, ious studies that found the FDG-PET method useful
the authors reported significantly reduced volume of for the differential diagnosis of AD and other types
the hippocampal formation, especially the CA1 region of dementia as well as AD and mild cognitive impair-
and the subiculum, in the six patients who converted ment (see the recent review by Mosconi, 2005).
from mild cognitive impairment to AD. The results On a neurochemical level, the cholinergic sys-
reported by Apostolova et al. (2006) principally repli- tem is considered to be severely affected in AD and
cated earlier findings emphasising the rate of hippo- it might be one of the key systems involved in the
campal atrophy as a key index for the conversion from progression of memory decline. Previous studies
mild cognitive impairment to AD (e.g., Grundman et proposed that cholinergic depletion in structures of
al., 2002) and for the classification of healthy elderly the basal forebrain, primarily the basal nucleus of
individuals, patients with mild cognitive impairment Meynert, were characteristic for AD (Whitehouse et
and patients with AD (e.g., Convit et al., 1997). al., 1982; Whitehouse, 1998). However, recent stud-
Studies with 18F-2-fluoro-2-deoxy-D-glucose posi- ies using functional imaging techniques showed that
tron emission tomography (FDG-PET) which aimed to cholinergic alterations can also occur in other brain
reveal global functional alterations (measured by rest- regions critically involved in memory processes, such
ing state glucose utilisation) of the demented brain in as the hippocampal formation and the cingulate
patients with AD found consistently lower metabolic gyrus (e.g., Herholz et al., 2004; Goekoop et al., 2006).
rates throughout the cerebral cortex, especially sur- In summary, AD co-varies with various structur-
rounding the temporo-parietal cortex (cf. Mosconi, al and functional brain changes, primarily affecting
2005). Figure 1 demonstrates an FDG-PET result in limbic and paralimbic structures at an early stage of
a patient with mild AD showing a pronounced hy- the disease. Here, the hippocampal formation is the
pometabolism in temporal and parietal regions with a main structure involved in dementia of the AD type.
dominance within the left hemisphere. FDG-PET can However, the hippocampus is also involved in other
differentiate between patients with AD and normal forms of dementias (see the paragraphs below). In
healthy subjects at an early stage, when examinations the course of the disease, further structural and func-
with magnetic resonance imaging (MRI) do not detect tional alterations occur. The abnormalities in the
structural differences in specific brain regions (Her- parietal, the temporal and the frontal lobes are the
holz, 1995; Herholz et al., 2002; Herholz, 2003). Global main neocortical correlates of the general cognitive
dementia severity (e.g., measured with the Mini Men- deterioration in patients with AD.
tal State Examination [MMSE], Folstein et al., 1975),
is also linked to glucose metabolism, primarily to the
Fig. 1. An AD patient’s FDG-PET showing hy-

pometabolic zones (dark-grey) within the tem-
poro-parietal cortex and frontal lobe, primarily
on the left side. The patient suffered from mild
dementia (MMSE score = 22). We thank the
Max-Planck-Institute for Neurological Research,
Cologne, for the assignment of the figure
27
2.2 Primary brain correlates of Lewy body occipital volume was not related to the presence of
dementia hallucinations in these subjects. By contrast, Harding
et al. (2002) found a correlation between the density
Dementia with Lewy bodies (DLB) is considered the of Lewy bodies within the temporal lobe and visual
second most common entity of neurodegenerative hallucinations in patients with DLB. In their post
dementias involving severe cognitive decline intense mortem study, they included a total of 63 brains with
enough to compromise activities of everyday life (cf. Lewy bodies and documented clinical signs of DLB
McKeith et al., 1996; McKeith, 2004). However, in pa- (including descriptions of hallucinations, dementia
tients with DLB cognitive functioning is more fluctu- severity and cognitive fluctuation as well as clinical
ating than in patients with AD, and DLB is associated response to levodopa therapy etc.). The authors re-
with visual hallucinations and motor symptoms (Ge- ported that the brains of cases with visual hallucina-
ser et al., 2005). The impairments in mobility and self- tions showed higher densities of Lewy bodies in the
care components of activities of daily living, presum- amygdala and the parahippocampal gyrus but not in
ably linked to extrapyramidal dysfunctions, are also the occipital lobes. The distribution of Lewy bodies in
stronger in DLB compared with AD (McKeith et al., the temporal lobe was, however, unrelated to cogni-
2006). However, the differential diagnosis of AD and tive fluctuation and severity of dementia.
DLB is difficult, because of the broad overlap of clini- On the other hand, studies with functional im-
cal symptoms in these dementias. aging techniques (primarily PET) demonstrated hy-
Studies with structural imaging techniques (com- pometabolism (or hypoperfusion in studies using sin-
puter tomography [CT] and MRI) aimed to reveal dif- gle photon emission computed tomography [SPECT],
ferential neural correlates of DLB and AD but with- respectively) of the occipital lobe in patients with DLB
out evidentiary results concerning regions that are compared to healthy individuals and – at least in some
involved only in one of the two diseases (cf. Small, studies – compared to patients with AD (e.g., Ishii et
2004). Considering global cerebral atrophy, several al., 1998; Lobotesis et al., 2001; Okamura et al., 2001).
studies found no significant differences between pa- The hypometabolism of the occipital lobe might be
tients with AD and DLB – at best, slightly lower vol- a critical correlate of hallucinations, as Imamura et
ume reductions in patients with DLB (e.g., O’Brian al. (1999) found an occipital hypometabolism in pa-
et al., 2001). However, there is solid evidence for dif- tients with DLB compared to patients with AD. The
ferential involvement of the medial temporal lobe in hypometabolism was more pronounced in patients
AD and DLB. For instance, Barber et al. (2000) found with than in patients without hallucinations (see
less severe medial temporal lobe atrophy (includ- also Higuchi et al., 2000). The primary sensorimotor
ing atrophy of the hippocampal formation and the cortex is consistently described as being unaffected,
amygdala) in patients with DLB compared to those while the parietal and temporal cortex as well as the
suffering from AD, when matched regarding global prefrontal section of the frontal lobe show also meta-
dementia severity. However, both groups had smaller bolic reductions. In addition to the changes of glucose
medial temporal lobes than healthy elderly subjects utilisation described above, some recent studies also
(see also the comparable results reported by Burton revealed specific alterations in dopamine functioning
et al., 2004; Tam et al., 2005). in patients with DLB potentially distinguishable from
Some authors hypothesised that the visual hal- that found in patients with AD (Hu et al., 2000; review
lucinations typically found in patients with DLB but in Herholz, 2003). There is also evidence for a cholin-
not in AD, may correlate with regional atrophy of the ergic involvement in the symptomatology of DLB
occipital lobes. However, in the study by Middelkoop (Herholz et al., 2000), but this seems to be less specific
et al. (2001), no specific differences were found be- than the dopamine abnormalities described above.
tween these two groups and normal individuals, and
28
2.3 Primary brain correlates of dementia with ditionally the anterior cingulate gyrus in emotional
fronto-temporal lobe degeneration and behavioural deficits in patients with FTD was
also demonstrated by Peters et al. (2006).
The term “fronto-temporal lobe degeneration” (FTLD) However, there are also some studies that high-
appoints to a relatively heterogeneous category of light the similarities of the syndromes subsumed as
syndromes linked to atrophy of frontal and tempo- FTLD. For instance, Ibach et al. (2004) investigated
ral regions. One typical form of dementia linked to metabolic changes in patients with FTLD (including
frontal abnormalities was formerly known as Pick’s patients with FTD, semantic dementia and primary
disease. Nowadays, three syndromes are subsumed progressive aphasia) using FDG-PET in comparison
by the term FTLD: fronto-temporal dementia (FTD), to glucose utilisation in patients with early AD. Five
semantic dementia, and primary progressive aphasia regions were revealed showing significant differences
(Neary et al., 1998). Beyond the commonality of pri- in glucose utilisation between FTLD and AD patients.
mary frontal abnormalities in these syndromes, they In four of them, namely the left insula, the left infe-
differ regarding their neural correlates in detail. Re- rior frontal gyrus, as well as the left and right medial
cently, Short et al. (2005) investigated potential dif- frontal gyrus, patients with FTLD had a lower meta-
ferential patterns of atrophy in patients with FTLD bolism than the patients with AD. Only one region –
and AD with respect to their clinical symptoms. They the right middle temporal gyrus – was more active
found that patients with FTLD and problems in per- in patients with FTLD than in AD patients. Unfor-
sonal conduct (FTD patients) had a focus of atrophy tunately, the sample size of patients with FTLD was
in the prefrontal cortex (bilaterally). In contrast, pa- too small to differentiate validly between the three
tients classified as suffering from semantic dementia subtypes of FTLD. Nevertheless, the results from the
showed atrophy centred towards the left temporal between-groups analyses demonstrate that the syn-
and both frontal lobes. This study emphasises that dromes subsumed as FTLD share some major neural
the clinical presentation of patients suffering from correlates that can be contrasted from those found
specific types of FTLD co-vary with differential pat- in patients with AD. However, there is also evidence
terns of structural brain changes. The involvement for a differential pattern of hypometabolism of fron-
of the frontal lobes in symptoms of FTD was recently tal and temporal regions in FTD relative to semantic
confirmed by the study of McMurtray et al. (2006). dementia. For instance, Diehl et al. (2004) examined
The authors examined behavioural measures and cerebral metabolic patterns of 25 patients with FTD
perfusion rates using SPECT in a sample of 74 pa- and nine with semantic dementia and contrasted
tients with probable FTD. The patients showed a the results with the pattern of healthy participants.
more pronounced right- relative to left-sided hypo- They found a frontal hypometabolism sparing the
perfusion which was correlated with apathy, loss of primary motor area in patients with FTD relative
insight, and further behavioural symptoms. The less to control subjects while the patients with seman-
distinctive temporal hypoperfusion was linked to hy- tic dementia showed primarily left-sided tempo-
pomania-like tendencies. Although this study has a ral reduction of glucose utilisation compared with
number of limitations (e.g., the rather vague meas- healthy individuals. However, a direct comparison
ure of functional abnormalities not allowing specific of the metabolic patterns of the FTD patients and
conclusions about the relevance of small cortical or those with semantic dementia was not performed.
subcortical regions), it emphasises the association Therefore, one cannot draw explicit conclusions
between frontal dysfunctions in patients with FTD about shared neural patterns in FTD and semantic
and their behavioural changes. The involvement of dementia. Concerning different patterns of neural
the prefrontal cortex, in particular the orbitofron- atrophy in FTD, semantic dementia and progressive
tal and the ventromedial prefrontal cortex, and ad- aphasia, only a few studies compared these three
29
Table 1. Summary of characteristic FDG-PET findings in dementias (modified from Table 1 of Herholz, 2003).
Dementia Brain regions with decreased glucose utilisation (reduced FDG uptake)
Alzheimer’s disease hippocampal formation and surrounding structures of the medial temporal lobe
temporo-parietal association cortices
posterior cingulate gyrus and precuneus
frontolateral regions (at least partially)
dementia with Lewy bodies primary and secondary visual cortex
temporo-parietal association cortices
posterior cingulate gyrus and precuneus
prefrontal cortex
fronto-temporal dementia predominantly medial frontal lobe,
also frontolateral and temporal regions
semantic dementia temporo-parietal regions
prefrontal cortex
primary progressive aphasia temporal lobe
subcortical ischemic vascular basal ganglia (nucleus caudatus), thalamus,
dementia variably also cerebellum, sensorimotor region, occipital lobe
conditions directly. Therefore, results reported must 2.4 Primary brain correlates of vascular
be seen as preliminary. However, while there is valid dementia
evidence for an involvement of the frontal and – at
least partially – the lateral part of the temporal lobes Vascular dementias imply various conditions of de-
in all three subtypes of FTLD, hippocampal atrophy mentia resulting from cerebrovascular disease. In ac-
is regarded as non-existent in primary progressive cordance with the heterogeneous aetiologies of vas-
aphasia and less severe in FTD relative to semantic cular dementia, such as stroke, subcortical ischemia,
dementia (van de Pol et al., 2005). multiple micro-infarcts, and small vessel disease, the
In summary, the primary brain structures in- potential brain lesions and functional changes vary
volved in patients with FTLD are firstly frontal re- extensively. Within this chapter, we can only briefly
gions (partially excluding the motor cortex) and summarise some of the most important current find-
secondly the temporal lobes. For the behavioural ings. A recent review can be found in Kalaria et al.
problems mainly occurring in patients with FTD, the (2004). The most prevalent condition of vascular de-
frontal abnormalities are the most dominant neural mentias is the subcortical ischemic vascular disease
correlate. For memory and language impairments (SIVD) for which hypertension and diabetes are the
seen in patients with semantic dementia and primary most relevant risk-factors. Patients with SIVD suf-
progressive aphasia, the (left) temporal lobe seems to fer from executive dysfunctions, as one of the most
be critical. Table 1 summarises prominent functional prominent neuropsychological impairments, beyond
changes in dementias of different origin, as revealed memory and other cognitive deficits. On structural
by FDG-PET. MRI, a reduction of frontal white matter and atrophy
of parts of the basal ganglia (i.e., the caudate nucleus)
can be observed (Barber et al., 2002). Kerrouche et al.
(2006) compared functional brain abnormalities in
patients with SIVD and AD using FDG-PET. They re-
ported an overlap of hypometabolic zones in the two
30
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34
Chapter 3
MEDICAL FACTORS INTERFERING WITH COMPETENCE IN DEMENTIA
Maria E. Soto and Bruno Vellas
1 Introduction Comprehensive Geriatric Assessment, CGA (Ruben-

stein, 1984) carried out in all patients at the time of
Alzheimer’s disease (AD) is an increasingly common the diagnosis and after, every six months during the
condition in older people with a median survival follow-up. The aim of the CGA in a regular follow-up
duration from initial diagnosis of 4.2 years for men is to detect complications in order to treat them or
and 5.7 for women (Larson et al., 2004) and it is re- even prevent them. One of the essential aims of medi-
sponsible for 75% of all dementias. AD is character- cal follow-up of Alzheimer’s patients and related dis-
ised clinically by cognitive impairment, dominated orders is to preserve a satisfactory physical indepen-
by memory complaints, which may be associated dence and in consequence a better quality of life.
with a syndrome of aphasia, apraxia and agnosia,
and disorders of executive function and judgement.
This global impairment leads to a progressively af- 2 Physical impairment
fected competence in patient’s everyday life, initially
altering the more complex activities, such as working Decline in physical autonomy is a major component
(intellectual or physical skills), social activities or lei- of symptoms in dementia. By definition, functional
sure activities and finally the simple basic activities impairment in dementia must be related to the cog-
such as eating, bathing or walking. Furthermore, the nitive decline.
natural course of the disease is also associated with There are a number of other factors such as par-
a number of specific complications such as behav- kinsonism and co morbid disorders that by them-
ioural and psychological symptoms (BPSD), weight selves may also contribute significantly to physical
loss, loss of functional autonomy, enhanced risk of disability. Furthermore, AD and other related disor-
falls and injuries which accelerate the process of de- ders are one of the main causes of dependency among
pendence and the loss of quality of life. Any of these the older population (Aguero-Torres et al., 1998).
complications can constitute a major burden both Activities of daily living (ADLs) are the activities
to the patient and to the family (Nourhashemi et al., that are needed for self-care and independent living.
1997). Moreover, concomitant medical factors such They include the basic activities of daily living (basic
as hearing and vision impairment, infections or cere- ADLs) and the instrumental activities of daily liv-
brovascular events could appear along the course of ing (IADLs). Maintenance of performing the ADLs,
the disease worsening its prognosis. All this requires basic and instrumental, independently, known as
greater resources’ utilisation, both medical and non- functional autonomy, is an essential concept in geri-
medical, representing a major public health problem. atric medicine. Among the older population, loss of
At the present, the management of AD should not be this function is a common manifestation of disease.
solely reduced to a specific pharmacological treat- In fact, the loss of competence in different activities
ment. This one should be contemplated as part of a such as the ability of shopping, managing money or
care plan which includes a regular follow-up with a travelling might be the reflection of an executive and
Chapter 3: M.E. Soto and B. Vellas
memory dysfunction, and be the first signs of cogni- Table 1. Items of the Katz basic ADL scale
tive decline. Recent disability of sewing or preparing • Bathing
meals could be the result of praxis disorders. In ad- • Dressing
dition, loss of functional competence has prognostic • Toileting
connotations in treatment response, morbidity and • Transferring
• Continence
mortality and it is associated with an increase in hos- • Feeding
pitalisation, institutionalisation, and the greater use
ADL: activities of daily living
of health services and loss of economic self-sufficien-
cy (Fried et al., 1998). This is especially important in Table 2. Items of the Lawton IADL scale
older adults with dementia. Loss of functional auton-
• Shopping
omy leads to a progressive dependency that evolves
• Preparing meals
into a loss of quality of life, of both patient and the • Travelling
family, and, loss of dignity. • Doing housework
• Doing laundry
• Using telephone
• Taking medications
2.1 Measurement of functional autonomy • Managing money
IADL: instrumental activities of daily living
Physical autonomy is a parameter easily to measure
by simple scales. Interviews are usually preferred to
performance-based tests. Functional scales have an objective in physical therapeutic (stimulation of
been established in the geriatric literature and list- basic-ADLs and/or IADLs letting the patient perform
ed as instruments used to assess physical function. those activities in which he is still capable to, trying
Some of these scales have been used in clinical tri- to avoid failure situations), (2) to set up medical and
als and there are others that are usually used in clini- non-medical support at home which will be deter-
cal practice worldwide such as the Katz basic ADL mined by the qualitative alteration of basic-ADL and
scale (Katz et al., 1963). The items of the Katz scale IADL scales and (3) to evaluate the severity and the
are listed in Table 1, and are answered as “yes” or “no” prognosis of the disease.
independently to perform. All of the Katz items are Continued participation in all ADLs is important
basic-ADLs related and it is used to evaluate elderly for the self-esteem of the individual with dementia.
persons’ dependence in hospital, living in retirement IADLs should be simplified because the individual
homes, or being cared for in their home. The instru- with dementia may still be able to participate in some
mental activities of daily living are usually measured steps but not in the entire activity. Supportive serv-
in clinical practice by the Lawton IADL scale (Law- ices may allow an individual with dementia to con-
ton, 1969) which items are listed in Table 2. It is readi- tinue living in his/her own home. However, a strategy
ly apparent that IADLs are lost earlier in dementia, too “over protected” or restrictive could result in be-
whereas basic ADLs are lost in more advanced stages havioural and psychological symptoms (BPSD) such
of the disease. Basic- ADL’s functional abilities decline as depression, agitation or aggressiveness or in loss
also in a predictable temporal order according to the of physical ability. But safety and stress induced by
complexity of the ADL: bathing, dressing, grooming, these activities have to be considered. Thus, the di-
toileting, walking, and eating. lemma of risk-benefits and safety-patient’s right and
The aim of using these tools to evaluate physi- autonomy is always present and needs to be periodi-
cal disability is not only to corroborate the demen- cally assessed.
tia diagnosis at the first visit. In fact they should be Decreased ability to ambulate is usually seen at
used in every follow-up visit in order to (1) establish the severe stages. Severe mobility problems arrive in
36
Medical factors interfering with competence in dementia
all patients at the very end stage of the disease and higher mortality after hip fracture at one year than
patients eventually become permanently bedridden. non demented patients (Baker et al., 1978).
Such a state is always accompanied by its own compli-
cations: pressure sores, infections, undernutrition, and
specific BPSD such as screaming. This later stage is 3.1 Causes of falls in AD patients
characterised by high morbidity, loss of quality of life,
and suffering, all of which also result in high medical Falls in AD patients may have a multifactorial nature.
costs. Thus, it seems to be essential to maintain am- Many studies have identified AD as an independent
bulatory ability for as long as possible. Ability to walk risk factor for falls (Jantti et al., 1995). Determining
can be promoted by a regular walking program and by the mechanisms by which AD increase the risk of falls
assistive devices such as Marry Walker (Trudeau et al., in elderly, however, has proved more difficult. The
2003). major specific factors that have been implicated in
falls in patients with dementia are: postural instabil-
ity, medication, neurocardiovascular instability and
3 Balance and gait disorders and falls environmental factors. Concerning postural insta-
bility, older people display greater instability and an
In patients with Alzheimer’s disease, posture rap- abnormal gait pattern; visual acuity, propioception,
idly becomes impaired as a consequence of aging vestibular function, and reaction time contribute to
(arthritis, impaired vision, muscle wasting, etc.) but these abnormalities. Available evidence does suggest
this may also be directly related to dementia or to that the more marked gait and balance abnormali-
medication. Disturbances of equilibrium can lead ties in subjects with AD are attributable to disorders
to numerous falls and fractures, or to abusive use of with the central processing of information that is re-
restraints. Accidents are then even more frequent. quired to maintain postural instability (Chong et al.,
Balance disorders and falls have major psychological 1999).
consequences leading to anxiety and a feeling of inse- Psychotropic medication (especially antipsy-
curity. They can result in decreased physical activity chotics, benzodiazepines, tricyclic antidepressants,
affecting competence in many areas as mentioned anxiolytics, and hypnotics) have been associated with
previously, and in addition, in social skills with loss of a doubling of fall risk in patients with dementia by af-
social contact, resulting in patient’s isolation fecting balance, reaction time, and other sensorimo-
Patients with dementia experience greater im- tor functions or by causing orthostatic hypotension
pairment of gait and balance and present an in- as a side effect. Extrapyramidal side effects possibly
creased frequency in falls in comparison to elderly increase the risk of falls (Robbins et al., 1989). Most
with normal cognition (Franssen et al., 1999). The es- of the association between psychotropic medication
timation of annual incidence of falls in patients with and falls in AD patients could be explained by in-
dementia varies between 70% and 85%. Patients with creased prescription of these drugs for management
dementia who experience falls are also at increased of agitation and wandering.
risk for sustaining serious injury. The annual inci- Neurocardiovascular instability refers to im-
dence of fracture is approximately 7% in this patient paired cardiovascular regulation that is detected
group, which is 1.5–3.0 times the rate in cognitively clinically as orthostatic hypotension, vasovagal syn-
normal fallers (Campbell et al., 1990). In addition, pa- cope or carotid sinus hypersensitivity. Autonomic
tients with dementia have a poorer prognosis once a dysfunction has been particularly demonstrated in
fall has occurred. They are less likely to make a good patients with AD, which suggests a theoretical reason
functional recovery after significant injury, are five for an increased prevalence of orthostatic hypoten-
times more likely to be institutionalised, and have a sion (Prettyman, 1998).
37
The role of the environment in AD patients with of life), whereas early on, especially in subjects who
falls is controversial, with some studies reporting an live alone at home, a visit from a home help will of-
association between falls and environmental hazards ten be sufficient to assist these patients in doing their
in both the community and institutional care (Ruben- shopping and preparing their meals. It therefore ap-
stein et al., 1994) and others finding no association pears to be essential to assess the nutritional status
(Tinetti et al., 1988). The limited evidence leaves the of each Alzheimer’s patient, particularly if he or she
contribution of the environment to falls in patients lives alone or has only little family support.
with AD also not clear. The pathophysiological mechanisms of weight
loss are complex and have only partially been eluci-
date. The alteration of nutritional status may be
3.2 Balance disorders and falls management secondary to the inability to perform the activities
of daily living or to disturbances of eating behaviour.
In order to evaluate walking and alteration in gait and In the severe stages of the disease, behavioural dis-
balance the Tinetti test could be used. Several studies turbances and food disorders, e.g., refusal to eat and
have shown that preventing falls in older people who wandering, are some of the most difficult complica-
do not have dementia is possible. A multifactorial ap- tions of the disease for health practitioners to treat.
proach that targets gait and balance, medications, However, numerous studies have shown that weight
environmental risk factors, orthostatic hypotension loss is observed in the course of the disease even when
and physiotherapy are successful in preventing falls the subjects still have a satisfactory energy intake.
(Wolf et al., 1996). Despite a significant risk of falls Certain authors suggest that the atrophy of the inter-
and the attendant adverse consequences in patients nal temporal cortex or the effect of the e4 allele of the
with AD, little research has been directed specifically apolipoprotein E may play a role in weight regulation
at the prevention of falls in this patient group. Physio- (Grundman et al., 1996; Vanhanen et al., 2001).
therapy in subjects with dementia may have a role in
fall prevention. Thus, regular physical exercises could
be an important part of the systematic management 4.1 Consequences of weight loss
of patients with AD.
Clinical practice shows that weight loss is accompa-
nied by a variety of complications (decreased immu-
4 Weight loss nity, infections, muscle atrophy, falls and fractures),
which affect the state of health and increases the risk
When he first described the disease in 1906, Alois of institutionalisation and mortality. Involuntary loss
Alzheimer emphasised the occurrence of weight loss of muscle mass with aging, termed sarcopenia, is a
in his patient. However, this weight loss has been widespread condition in AD patients, associated with
mistakenly considered as occurring at the late stages a reduction in muscle strength and function which
of the disease. We now know that it can occur as soon gradually leads to impairment in the activities of dai-
as the first symptoms of the disease appear. ly living, progressive dependence and pressure sores.
The sooner the management strategy is set up, Malnutrition itself would not affect directly any com-
the more effective it will be. Otherwise, we may rap- petence, but its complications such as sarcopenia
idly find ourselves confronted with undernourished, and physical impairment would be responsible of af-
anorexic subjects, where there is very little room for fecting many competences from advanced activities
manoeuvre between doing nothing (often seen as of daily living (driving, sports, working) and IADL, in
abandonment of treatment) or setting up enteral nu- a first time, and basic-ADL in an ultimate step (see
trition (which is then seen as artificial prolongation Tables 1 and 2).
38
Medical factors interfering with competence in dementia
4.2 Assessment and management of the other hand, rigidity and bradykinesia or a “par-
weight loss kinsonian” gait are more frequent.
At a late stage of dementia, painful muscle and
The nutritional status of the elderly person can be joint contractures may develop, leading to a perma-
quickly and easily evaluated with the Mini Nutrition nently bedridden state. The value of passive mobi-
Assessment (MNA). The MNA is the most validated lisation of the joints to prevent those contractures
tool to assess nutritional status in older population. must be stressed.
It is also useful in Alzheimer’s patients. The MNA is Even though, visual and hearing impairment
able to differentiate individuals with good nutrition- are not direct complications of dementia, they are
al status (score > 23.5), with poor nutritional status important medical factors to assess and to correct,
(< 17) or at risk of malnutrition (between 17 and 23.5) when this is possible, since sensorial deficiency may
(Vellas et al., 1999). aggravate the disease prognostic and accelerate its
It is very important to assess weight regularly, complications such as falls and physical decline.
every six months, in AD patients, as well as assessing
their nutritional status with the MNA at least once
a year. If the patient has some relevant life event, 6 Conclusions
his/her nutritional status should be reassessed once
again. If the MNA score is less than 23.5, it is neces- With the aging of the population, Alzheimer’s disease
sary to look carefully at each MNA item to determine and related disorders has become a major public
where the patient loses points to be able to correct health problem. Management of the disease should
the factors responsible for the altered nutritional not be only limited to a specific pharmacological
status. If the MNA is less than 17, the patient is more treatment. A global approach is needed to set up
likely already to present protein-caloric undernu- through out a Comprehensive Geriatric Assessment
trition and thus, a more intense strategy should be (CGA) which will also take into account other facets
set up. Caregiver education and/or with oral sup- of the disease, along with the cognitive one, such as
plementation have demonstrated to increase weight, loss of independence, weight loss, falls or balance
MNA score, and muscle mass in Alzheimer’s patients disorders. Cognitive dysfunction (memory loss, syn-
(Lauque et al., 2004). It is essential to improve nutri- drome of aphasia, apraxia and agnosia, and disor-
tional intake as soon as possible, in the earliest stage ders of executive function and judgement) are firstly
of an altered nutritional status, since once the pro- responsible for affecting competence both in intel-
tein-caloric undernutrition is established it is very lectual skills (e.g., the ability to fulfil one’s financial
difficult to fight against it and its severe complications. obligations, to play chess or do crosswords, to work,
On the other hand, complications related to tube-feed- to plan a trip, to use a computer…) and in mainly
ing are clearly more important than the benefit in the physical skills (e.g., the ability to do some sports, to
very severely demented patients (Mitchell et al., 1997) do housework or laundry, to get dressed or use the
toilet…). In addition, dementia complications such
as physical impairment, weight loss, falls and bal-
5 Other physical symptoms ance disorders, and parkinsonism may also affect
competence. The majority of these medical factors
Alzheimer’s disease is one of the causes of epilepsy affect competence by the resulting impaired mobility
and cerebrovascular events in the elderly subject. Nu- mechanism. All competences affected interfere with
merous patients develop extrapyramidal symptoms. social, family and working lives.
Resting tremor is rarer than in idiopathic Parkinson’s CGA should be carried out in all patients at the
disease or in drug-induced striatal syndromes. On time of diagnosis and then every six months. The
39
concern of the clinician at the present time must be Larson EB, Shadlen MF, Wang L, McCormick WC, Bowen JD,
to identify patients as early as possible in order to Teri L, Kukul WA (2004) Survival after diagnosis of Alzhei-
rapidly set up a medical and non-medical interven- mer’s disease. Ann Intern Med 140(7): 501–09
Lauque S, Arnaud-Battandier F, Gillette S, Plaze JM, Andrieu
tion strategy, with the essential aim of preserving
S, Cantet C, Vellas B (2004) Improvement of weight and
as long as possible satisfactory independence and, fat-free mass with oral supplementation in patients with
thus, better quality of life for the patient and his/her Alzheimer’s disease at risk of malnutrition: a prospective
family. randomized study. J Am Geriatr Soc 52(10): 1702–07
Lawton MP, Brody EM (1969) Assessment of older people:
self-maintaining and instrumental activities of daily living.
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40
Chapter 4
DRUGS THAT AFFECT COMPETENCE
Conor O’Luanaigh and Brian Lawlor
1 Introduction (Martin et al., 2000). In addition to polypharmacy,

altered pharmacokinetics and pharmacodynamics
The elderly (over 65s) constitute 11.4 percent of the seen with aging, and associated co-morbid diseases
Irish population yet receive 47% of all prescribed have an additive or synergistic role with drugs in
medicines on the GMS (General Medical Services); it causing acute confusion/delirium or worsening cog-
is estimated that 32 items per year are prescribed per nitive impairment.
elderly person (GMS Prescribing Data, 2000). Simi- This chapter will review the types and classes of
lar figures are seen across Europe. This is thought drugs that can affect cognition and thus as a result
to be due to the presence of multiple pathologies, alter the person’s competence or mental capacity to
the increasing range of available medicines, inap- make decisions and function independently.
propriate prescribing, lack of medication review and
an increased emphasis on preventative treatments
in older people. Polypharmacy is the norm not the 2 Competence/capacity
exception. A significant factor is repeat prescribing
particularly where older patients are not reviewed There is no single definition of competence that is
regularly. Institutionalized patients tend to be on universally accepted. Competence is not only a legal
an even larger number of drugs (Denham and Den- norm and medical determination, it is also a societal
ham, 1998). Self-medication with over the counter construct designed either to empower or to restrict
(OTC) medicines or continued treatment for a previ- the rights of persons for particular purposes. It is
ous condition that has resolved is also common and not an all or one phenomenon and it can be lost and
can increase the risk of adverse events (Batty et al., subsequently regained as can be the case when an in-
1997). dividual develops a delirium and loses capacity but
Frequently many of these medications (both regains it on resolution of the delirium. The US Presi-
prescribed and OTC) are psychotropics or drugs that dent’s Commission (President’s Commission for the
can have an effect on the central nervous system and Study of Ethical Problems in Medicine and Biomedi-
can adversely affect functioning and decision mak- cal and Behavioural Research, 1982) recommended
ing capacity. Drugs are one of the common risk fac- that persons be considered competent if
tors for cognitive impairment and may be considered
the most easily reversible trigger. While delirium is • they are capable of communicating pertinent in-
a multifactorial process it is estimated that medica- formation,
tions alone may account for 12–39% of all cases. The • they possess a set of values and goals,
risk of inducing cognitive impairment is particularly • they have the ability to reason about choices.
high in the frail elderly and those with a pre-existing
dementia. Polypharmacy itself is an independent risk The failure to identify decision options (where they ex-
factor for causing drug induced confusion/delirium ist) and the inability to understand the consequences
Chapter 4: C. O’Luanaigh and B. Lawlor
of those options have been found to be strong indica- the different cognitive functions that determine com-
tors of incapacity (Silberfield, 1994). petence. This can allow us therefore to see how differ-
However in understanding and assessing compe- ent drug groups can affect areas of cognition and thus
tency, it can be helpful also to further define it through competence (see Fig. 1). The ability to understand and
Fig. 1. Drugs that affect competence
42
Drugs that affect competence
Table 1
Drugs that adversely effect cognition Putative mechanism

• Tricyclic antidepressants, – amitriptyline, imipramine Anticholinergic action affects attention and memory.
• Antiparkinsonian agents, – procyclidine, benztropine, etc. as above
• 1st generation antihistamines, – chlorpheniramine, diphe- as above
nyhydramine etc.
• Antispasmodics – hyoscine, oxybutynin as above
• Antinauseants such as scopolamine as above
• Antiarrhythmics such as disopyramide as above
• Benzodiazepines CNS depressant affects arousal, attention, reaction time and
episodic memory
• Opiates, -morphine, codeine CNS depressant, affects arousal inhibition of neuronal Na+
K+ATPas. Codeine has anticholinergic action.
• Quinolone antibiotics NMDA agonists, GABA-A antagonist
• Lithium, digoxin Drug toxicity due to reduced renal clearance. Lithium affects
attentional processing
• Alcohol CNS depressant- intoxication causing sedation and attentional
difficulties. Chronic use can cause an amnestic syndrome
affecting episodic memory as well as impairing executive
function and judgement.
• Corticosteroids Enhancement of NMDA receptor activity, can affect declara-
tive memory
• Diuretics Dehydration with electrolyte disturbances possibly impairing
attention.
• Antipsychotics Frontal-striatal dopamine blockade affecting attention and
executive function
be aware of situations and choices is related to execu- 3 Medications associated with adverse effects
tive functioning and memory. The ability to appreciate on cognition
future implications of decisions or choices relates to ex-
ecutive functioning. Disordered attentional processing Many groups of drugs can have effects on memory and
and receptive and expressive dysphasia preclude simple cause cognitive impairment. Table 1 shows some of
choice. Therefore when assessing for competence it is the commoner types and the mechanisms of action.
vital to assess the cognitive domains of attention, mem- As well as prescribed drugs, over the counter,
ory, language and frontal/executive function. Different complementary/alternative, or illicit products can all
drugs can affect these various domains and thus impair have an effect on cognition which can impair compe-
competence, for example anticholinergics can affect tence. The most common drugs that can affect cog-
both memory and attention, while antipsychotics can nition include anticholinergic medications, benzodi-
affect frontal/executive function. azepines and narcotics. Other medications in toxic
doses can also cause cognitive impairment.
43
In this section, we review the more common from specific anticholinergic medications such as
classes of drugs that can adversely affect different ar- procyclidine or trihexyphenidyl many other medica-
eas of cognition. However it is important to make the tions have anticholinergic properties that can cause
following generalization before describing each class impaired cognition. Tricyclic antidepressants have a
of drugs in detail: Differences between effects of dif- significant anticholinergic effect and are well known
ferent drugs may be caused by several variables such causes of delirium.
as dose, route of administration and bioavailability of However quite apart from delirium, tricyclics
the drug. For example a high dose versus a low dose such as amitriptyline can have an effect on cognition
of alcohol may have different effects on cognition so as to affect competence to drive. Studies by Ram-
(Zuccala et al., 2001). aekers (2003) and Veldhuijzen (2006) have shown
that amitriptyline and imipramine can cause driving
impairment for up to one to two weeks after initia-
3.1 Anticholinergic drugs tion of treatment at which time driving performance
returned to normal. Many of the older antihistamines
The studies of Deutsch (1971) have documented a all have potent anticholinergic effects and can cause
clear role for cholinergic transmission in memory cognitive impairment, as can painkillers such as
and attention. Clinical studies with the central mus- pethidine which is converted to an anticholinergic
carinic antagonist, scopolamine, provide evidence for metabolite which can cross the blood brain barrier
the involvement of the cholinergic system in memory and affect cognition.
and learning (Drachman and Leavitt, 1974). These
have shown that an antagonist like scopolamine can
transiently impair performance on a variety of mem- 3.2 Benzodiazepines
ory tasks, including episodic memory and retrieval
and access to semantic memory. Scopolamine affects The cognitive effects of acute benzodiazepine ad-
the learning of new information; immediate recall on ministration have been well documented in humans
digit span is not affected but the storage of new mem- (Lister, 1985). The best-documented cognitive effect
ories is disrupted as shown by testing on “supraspan” of benzodiazepines has been anterograde amnesia
sequences (Drachman and Leavitt, 1974). Most stud- (Wolkowitz et al., 1987). The time of onset and du-
ies suggest that scopolamine can interfere with the ration of this effect varies according to the benzo-
acquisition and storage of new information (Ghone- diazepine used, but the effect can last more than 6
im and Mewaldt, 1975; Peterson, 1977; Ghoneim and hours. Although they disrupt the encoding and con-
Mewaldt, 1977; Safer and Allen, 1971). It also appears solidating phase of learning, benzodiazepines have
that anticholinergic agents can disrupt the retrieval not been found to affect immediate recall and access
process from knowledge memory (Drachman and to previously acquired information. Sedative effects
Leavitt 1974; Wolkowitz et al., 1985). These deficits also accompany the amnestic effects of these drugs.
can be partially reversed by the administration of These sedative effects can obviously impact on the
physostigmine, a cholinesterase inhibitor, suggesting perceptual processes of the patient and interfere with
the effects of scopolamine on memory are specific to the ability of the patient to pay attention to a stimu-
the cholinergic system. lus, thus directly affecting the person’s competence.
Anticholinergic activity is also associated with The pattern of memory impairment produced
the occurrence and severity of delirium, and recent by benzodiazepines is different from that produced
studies by Flacker et al. (1998), have shown an as- by anticholinergic agents. In contrast to the anti-
sociation between higher serum anticholinergic ac- cholinergic agents, benzodiazepines do not interfere
tivity and a greater severity in delirium. Quite apart with previously learned information (Peterson and
44
Ghoneim, 1980). Benzodiazepines have more selec- primarily affects the acquisition of new information
tive disruptive effect on episodic memory, so the en- rather than the retrieval of previously learned mate-
coding of new memories is especially impaired. This rial (Rosen and Lee, 1976; Birnbaum and Parker, 1977;
type of memory impairment most closely resembles Hashtroudi et al., 1983; Williams and Rundell, 1984).
that of the alcoholic amnestic syndrome. Busto et al. If information is presented to the subjects while they
(2001) found that 53% of seniors had used a sedative are in an intoxicated state, their ability to recall a
hypnotic in the past year. Seventeen percent used series of events is markedly impaired, regardless of
over the counter sedatives while 83% were using whether retrieval takes place when subjects are sober
prescription medications. These findings show that or intoxicated. Subjects may show alcohol-induced
benzodiazepine use is quite widespread amongst the impairments in acquisition of new information for
elderly and thus can be a common cause of impaired several reasons. Intoxicated subjects may not per-
cognition. Confusion and cognitive impairment sec- ceive the incoming stimuli as well as sober subjects.
ondary to benzodiazepines is most commonly seen Furthermore, intoxicated subjects may not attend to
with medium to long acting benzodiazepines such as the stimuli, or may not process and encode informa-
clonazepam and diazepam. One must also be mindful tion efficiently. Alcohol may also produce disruption
that abrupt withdrawal of such drugs can also trigger in attention. Since learning impairment have been
a delirium that would impair competence associated with decreases in arousal and alcohol pos-
sesses CNS depressant properties, it is possible that
the effect of ethanol on cognition could be mediated
3.3 Alcohol in part by its sedative effects.
As well as the deleterious effects of alcohol in-
Community based studies in older people have estimat- toxication on cognition and capacity, acute alcohol
ed the prevalence of alcohol misuse or dependence as withdrawal can result in a withdrawal state, which
2–4%, (Adams and Cox, 1995) with much higher rates obviously has a huge impact on patient’s capacity.
of 17% (men) and 7% (women) when less stringent cri- Quite apart from the acute effects of alcohol (intoxi-
teria such as excessive alcohol consumption are used cation and sudden withdrawal), chronic abuse of al-
(UK National Digital Archive of Datasets, 1994). For cohol can lead to an amnestic syndrome known as
hospital based studies, the same difficulties abound as Korsakoff ’s syndrome. The main area of memory af-
the definitions for alcohol use disorders are not clear- fected is the ability to learn new information. Usually,
ly specified in many studies. In general, however, the intelligence and memory for past events is relatively
prevalence for elderly inpatients is higher than for eld- unaffected, so that an individual may remember what
erly people in the community, with estimates of 14% occurred 20 years previously, but is unable to remem-
for patients in emergency departments, 18% for medi- ber what occurred 20 minutes ago. This memory de-
cal inpatients, and 23–44% for psychiatric inpatients fect is referred to as anterograde amnesia. In essence
(Goldstein et al., 1996). Among elderly people, socio- these patients cannot consolidate or remember re-
demographic factors associated with alcohol use dis- cent events and thus are prone to confabulation.
orders include being male (Saunders et al., 1991; Iliffe
et al., 1991) socially isolated (Bristow and Clare, 1992)
single, (Bristow and Clare, 1992; Ganry et al., 2000) and 3.4 Antipsychotics
separated or divorced (Ekerdt et al., 1989).
Many studies have documented cognitive im- Antipsychotic drugs can be of modest benefit in the
pairment in response to the consumption of alcohol- treatment of certain behavioural problems in demen-
containing beverages (Parsons et al., 1987). Many of tia although their use can be limited due to increased
these studies suggest that alcohol when given acutely, risk for cerebrovascular events and increased mor-
45
tality rates (Schneider et al., 2006). In patients with ticular attention to avoid use of antipsychotics with a
schizophrenia, treatment with atypical antipsychot- high anticholinergic effect.
ics has shown benefits in cognition in particular in
the areas of attention and executive function (Melt-
zer and McGurk, 1999). 4 Medications with potential beneficial effects
However use of antipsychotics in patients with on cognition
dementia is thought to impair cognition in these
patients. Certain antipsychotics such as chlorpro- Having looked at the various drugs that can adversely
mazine have a significant anticholinergic effect and affect cognition we are now going to look at drugs
as mentioned already this can have an effect on at- that may have beneficial effects on cognition and
tention and memory. Other antipsychotics such as thus improve or help maintain capacity.
haloperidol, (which has little or no anticholinergic ef-
fect) has been shown by Devenand et al to also cause
a decline in cognitive functioning in patients with 4.1 New generation antidepressants
Alzheimer’s disease (Devenand et al., 1989). Cross
sectional studies have also shown that patients with As mentioned earlier certain older tricyclic antide-
dementia who take antipsychotics have worse cog- pressants can have a significant effect on memory
nitive function than those who do not (Brown et al., due to their potent anticholinergic effects. This has
1993). More recently a 2 year longitudinal prospective led to increased prescribing of SSRI’s in the elderly.
study by McShane et al. (McShane et al., 1997) which However what of the potential beneficial effects of
looked at how typical antipsychotics affect cognition SSRI’s on cognition and thus competence? Previous
in dementia, showed that the mean decline in cogni- studies have shown that the serotonergic system is
tive score in those who took antipsychotics was twice affected in Alzheimer’s disease (Azmitia, 1978). Not
that of patients who did not. The antipsychotic medi- only is brain serotonin content and uptake reduced,
cations that were used in this study were, haloperi- but serotonergic cell density in the raphe nuclei is
dol, chlorpromazine, thioridazine and promazine. In also reduced (Arai et al., 1984; Carlsson et al., 1980;
the most recent study which looked at atypical an- Sparks et al., 1986; Mann and Yates, 1983; Yamamoto
tipsychotics and cognition, Ballard et al carried out and Hirano, 1985). However no studies to date have
a randomized double blind placebo controlled trial demonstrated a clear direct beneficial effect on cog-
in which they compared the atypical antipsychotic – nition with use of SSRI’s in patients with Alzheimer’s
quetiapine with rivastigmine and a placebo (Ballard disease.
et al., 2005). They found significant greater cognitive Of note however there have been some com-
decline in the group taking quetiapine compared to parison studies of sertraline and nortriptyline in the
placebo. In a recent meta-analysis looking at the ef- treatment of major depression in the elderly (Finkel
ficacy and adverse effects of atypical antipsychotics et al., 1999; Bondareff et al., 2000). These have shown
for dementia (Schneider et al., 2006), it was found some cognitive benefits in the groups taking sertra-
that cognitive scores worsened for all drugs included line as opposed to the group taking nortriptyline,
in the review (olanzapine, quetiapine, risperidone independent of the antidepressant effects of the in-
and aripiprazole). The exact areas of cognition that dividual drugs. The exact mechanisms as to why this
are impaired as a result of antipsychotics are not fully might be the case has yet to be discovered and more
established but thought to be related to impaired at- research is required to elucidate this. A more recent
tention and possibly increased sedation in the case study looked at reboxetine and its effects on cogni-
of quetiapine. Therefore prudent use of antipsychot- tive functioning in depressed patients as compared
ics in patients with dementia is advised paying par- to paroxetine and placebo. Reboxetine is a selective
46
noradrenaline reuptake inhibitor with proven effica- 4.3 Dopamine agonists

cy in depression. In this double blind placebo and ac-
tive treatment controlled study, it was found that the Human postmortem and animal experimental stu-
group taking reboxetine had significantly improved dies have all suggested a decline of the cerebral
cognitive scores in the domain of attention compared dopaminergic neuronal system with age (de Keyser
to paroxetine and placebo (Ferguson et al., 2003). et al., 1990a,b; Misra et al., 1980). In more recent years
studies have looked at the effect of age on dopamine
receptors in normal human brain measured by posi-
4.2 Cholinesterase inhibitors tron emission tomography (PET scans), and these
have also confirmed a decrease in D2 dopamine re-
Since the introduction of the first cholinesterase in- ceptor binding as a consequence of normal ageing in
hibitor in 1997, most clinicians and probably most pa- parallel with the decline of the presynaptic nigrostri-
tients would consider the cholinergic drugs, donepe- atal dopaminergic neuronal system (Antonini et al.,
zil, galantamine and rivastigmine, to be the first line 1993). Further studies have been carried out looking
pharmacotherapy for mild to moderate Alzheimer’s at the possible association between decline in brain
disease. The drugs have slightly different pharmaco- dopamine activity with age and cognitive impair-
logical properties, but they all work by inhibiting the ment. One such study by Volkow et al. (1998) con-
breakdown of acetylcholine, by blocking the enzyme cluded that age-related decreases in brain dopamine
acetylcholinesterase. activity contributes to impaired performance on
Many studies have been carried out on these tasks that involve frontal brain regions as well as be-
drugs and they have consistently been shown to be ing associated with a decline in motor performance
effective and well tolerated (Gauthier et al., 2002; (Volkow et al., 1998). It suggested too that interven-
Boada-Rovira et al., 2004). More recently a Cochrane tions that enhance dopamine activity may improve
systematic review by Birks et al. (2006) has been car- performance and quality of life in elderly.
ried out in which they reviewed all unconfounded, Following on from these studies trials have
blinded, randomized trials in which treatment of a looked at the efficacy of dopamine agonists in rela-
cholinesterase inhibitor was compared with placebo. tion to improved cognition. The dopamine agonist
In this review he found that treatment for periods of 6 piribedil has been tested against placebo in healthy
months and one year with one of the cholinesterase in- elderly volunteers in one randomized double blind
hibitors at the recommended dose produced improve- trial (Peretti et al., 2004). The group receiving pir-
ments in cognitive function, on average – 2.7 points ibedil showed a beneficial effect on the acquisition
(97% CI –3.0 to –2.3) in the midrange of the ADAS-Cog of a problem-solving routine, and as such it was
scale. No significant differences in efficacy were found concluded that piribedil is likely to enhance cogni-
between the different cholinesterase inhibitors. In a tive-skill learning in healthy older adults. In another
nutshell this review along with all the studies carried interesting study by Dindagur and Sivaramakrishnan
out previously, consistently show that these drugs can (2001), they investigated whether piribedil improves
have a mild but significant beneficial effect on cogni- cognitive function in patients with mild cognitive
tion in people with Alzheimer’s disease. This is all the impairment. Again this study found that the group
more important in a clinical setting where maintaining taking piribedil had significant increases in MMSE
or improving cognition even if just for a relatively short scores.
period can help maintain the person’s ability to make In patients who have cognitive decline as a re-
decisions about their wellbeing and other issues. sult of Parkinson’s disease, some short-term im-
provement in many cognitive tasks is obtained with
use of dopamine agonists (Kulisevsky et al., 2000).
47
Although, it appears too from another study looking that can potentially beneficially affect cognition and
at dopamine agonists in patients with Parkinson’s as a consequence help to maintain competence and
disease that the agonists influence cognition accord- function.
ing to the receptors which they act upon (Brusa et
al., 2005). Specifically the D2/D3 agonist pramiprex-
ole appeared to significantly worsen verbal fluency, Key points
short-term memory and attentional-executive func-
tions in comparison to l-dopa and pergolide both of • Polypharmacy plays a significant role in impair-
which stimulate D1 and D2 receptors. ing cognition and function in older people.
In summary, age related dopamine decline plays • Cognitive determinants of competence include
a role in cognitive impairment in the elderly, however memory, attention, executive function and lan-
how significant this is in patients with Alzheimer’s de- guage.
mentia is unclear. Further studies testing tolerability • Different drug classes can alter cognition and
and efficacy in patients with Alzheimer’s, as an adjunc- competence in different ways.
tive treatment as are warranted. However in patients • Anticholinergic drugs impair episodic memory
with Parkinson’s disease with cognitive impairment as well as impairing retrieval and access to se-
and possibly also Parkinson’s dementia one could con- mantic memory.
sider dopamine agonist treatment as an adjunctive • Benzodiazepines impair attentional processes
treatment for cognition to rivastigmine, which is al- through their sedative effects, but also impair
ready approved for use in Parkinson’s disease demen- encoding of new memories. They do not impair
tia in the EU. previously learned information.
• Always consider alcohol as a potential cause of
cognitive impairment either through its acute or
5 Conclusions chronic effects.
• Exercise caution with regards to the use of anti-
Assessing for competence or capacity is an impor- psychotics in patients with dementia as these
tant role of the physician in the management of pa- can worsen cognition.
tients with dementia. Capacity involves a number of • Cholinesterase inhibitors can stabilize cognition,
cognitive domains, all of which have to be assessed to function and maintain competence in Alzhei-
determine competence. The frail elderly and people mer’s disease and Parkinson’s disease dementia.
with a pre-existing dementia are especially vulner-
able to drug induced cognitive impairment which
will adversely affect their competence and abilities. References
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50
Chapter 5
WHO DECIDES WHO DECIDES? ETHICAL PERSPECTIVES

ON CAPACITY AND DECISION-MAKING
Deborah Bowman
“Illness is not something a person has; it’s another way of being”

Jonathan Miller “The Body in Question”
1 Introduction whether one attributes the moral precept for such a

conclusion to autonomy or virtuous practice or re-
Capacity1 is at the heart of ethical decision making in spect for others. Conversely, where a person lacks the
healthcare. For those who subscribe to a principled capacity to make decisions, healthcare professionals
approach to moral reasoning (Gillon, 1985; Gillon have a responsibility to protect his or her interests3.
and Lloyd, 1993; Beauchamp and Childress, 1994), It is remarkably easy to acknowledge the sense of the
autonomy is often said to be pre-eminent amongst preceding statements; however, they belie the moral
the four principles of medical ethics2, or at least “first complexity of assessing capacity implying a satisfying
amongst equals” (Gillon, 2003). For those who prefer but artificial binary certainty in which ethical prac-
methods of ethical analysis other than the influential tice constitutes an informed choice by the profes-
“four principles” approach, there remains a funda- sional between affording his patient full entitlement
mental assumption that self-determination is afford- to make his or her own decisions or acts without
ed moral value and priority (Campbell, 2003; Harris, reference to the patient’s preferences because he or
2003; Cowley, 2005). To deny a capacitous person she has not met the demands of the “test” of capacity.
the freedom to make decisions about his or her own Such moral simplicity is seductive, perhaps particu-
treatment and healthcare is fundamentally unethical larly to the busy and overworked clinician, but it is a
simplicity that is illusory because it disregards three
1
I use the term “capacity” as it has become the common- important aspects of what it means to assess capac-
est term in the UK for describing a person’s ability to make ity ethically.
decisions about their care and has been incorporated into First, capacity is not an “all or nothing” construct
legislation, namely the Mental Capacity Act 2005. Readers but a fluctuating concept. In practice, patients may
may also be familiar with the synonymous term “compe-
tence”. Furthermore, I am concerned with the capacity to
3
make healthcare decisions. In the UK, capacity is also vari- Although, of course, embedded in the almost casual asser-
ously assessed for diverse non-medical purposes including tion about protection of interests are multiple and complex
financial decisions, probate and contractual law, electoral value and moral judgements, e.g. are “interests” biomedical,
rights and personal relationships. social, psychological? What qualifies a professional trained
2
The four principles are autonomy, beneficence, non-main a particular discipline to speculate about a stranger’s
leficence and justice. The “four principles” approach is a social preferences and therefore “interests”? If biomedical
model of ethical analysis that has been remarkably influen- and broader interests collide, who should decide what best
tial, if not universally embraced amongst ethicists. constitutes protection of interests?
Chapter 5: D. Bowman
be somewhere along a continuum of capacity and dings, 2003) the possibilities of interacting ethically
this may vary enormously depending on external fac- with the person of impaired or reduced cognition are
tors. Ethical practice therefore demands attention to much greater, and it is argued, more relevant than
those influential variables that may diminish, alter a quasi–fetishistic preoccupation with attaining ca-
or enhance a patient’s capacity. If, and I assume most pacitous status.
readers agree, there is moral value in self-determina- This chapter then focuses on three under-ex-
tion, it is ethical to maximise the chances that patients plored but potentially valuable dimensions to fa-
have the opportunity to express their preferences. In- cilitating ethical decision-making with patients in
deed, it is argued that it is not merely “nice” to aspire to whom a dementing process has begun, namely (i) the
be alert to variables that affect a patient’s capacity, but power of professionals to influence capacity and the
it is a duty for healthcare professionals to be so alert. concomitant responsibility to enhance rather than
Ways in which healthcare professionals might influ- diminish capacity; (ii) the value of scrutinising the
ence a patient’s capacity are discussed post. ethical basis of capacity and decision-making to ex-
Second, if capacity is not something that patients tend the analysis beyond the restricting boundaries
either do or do not have then it is likely that many pa- of conventional interpretations of autonomy; and (iii)
tients whom professionals meet in their work will be in the alternatives to capacity as the sole means of fa-
a grey hinterland where they may sometimes or even cilitating self-determination.
only occasionally be capacitous to decide about some
things. The healthcare professional must then engage
with the moral challenge of those patients who hover 2 An ethical gift: the power and responsibility
uncertainly in an ethico-legal hinterland in which ca- of the professional in facilitating capacity
pacity may be fleetingly, perhaps even tantalisingly,
present or may be just out of grasp. For professionals Although one of the central tenets of this chapter is
who work with people who have dementia this group that to concentrate exclusively on “capacity” is to fo-
of people may form the majority of their case load, so cus on the wrong moral challenge when aspiring to
to focus solely on assessing capacity as the moral en- ethical practice, it is unsurprising that the assessment
deavour at hand, may well be to focus on the wrong of capacity is such an important clinical skill. The first
moral problem. The more apposite moral challenge is ethical question therefore might be to consider what
to practise ethically in respect of those who may only the “virtuous” healthcare professional(s) and team(s)
be sometimes, rarely or never capacitous. would have to ensure to maximise ethical practice
Finally, it is too readily assumed that autonomy, (Toon, 2002; 2007). What is the mixture of phronesis
or perhaps more accurately a particularly narrow or “practical wisdom” and qualities to which the pro-
interpretation of autonomy (Clement, 1998; Agich, fessional should aspire in assessing capacity?
2003), is the natural ethical antecedent of capacity Capacity is a legal construct4 that determines
thereby necessarily elevating the assessment of ca- whether a person is afforded rights, choices and
pacity to disproportionate status. If, however, one freedoms by healthcare professionals. Therefore, the
considers the moral foundations of decision-mak-
ing more imaginatively and is alert to other ethical
4
models such as virtue ethics (Macintyre, 1985; Toon, Although capacity will rarely, if ever, be assessed without
clinical input, it remains a legal rather than a medical con-
2002; Gardiner, 2003) in which respect is embedded
cept, i.e., in the UK its definition is drawn from the com-
(Campbell, 2003), feminist and communitarian eth- mon law per J. Thorpe in Re: C (Adult: Refusal of Treatment)
ics in which professional ethics are reinterpreted to The Mental Capacity Act 2005 has largely adopted the com-
focus on equality and individuality (Larabee, 1993; mon law test for assessing capacity save for the confusing
Tong, 1997; Clement, 1998) or the ethics of care (Nod- “belief ” criterion.
52
Who decides who decides? Ethical perspectives on capacity and decision-making
process of assessing5 whether or not someone is ca- bring a piece to the self-determination jigsaw. What
pacitous equates to the bestowal or denial of legal does this mean in practice? First, professionals must
privileges. As such, the professional engaged in as- be wary of relying too much on previous assessments
sessing a person’s capacity should reflect on what it of capacity and regular review should be embedded
might mean to be “virtuous” in this context. Indeed, in the system. There should be overt acknowledge-
to borrow from two writers who have offered the ment that the way in which a professional asks ques-
somewhat old-fashioned term “conscience” as an al- tions or gives information can enhance or diminish a
ternative to the sometimes limiting language of med- patient’s capacity. The location, timing, physical and
ical ethics (Hughes and Baldwin, 2006), what might emotional variables can all inform the assessment of
the “conscience” of healthcare professionals charged capacity and should be addressed so far as possible to
with helping patients with dementia make decisions minimise the potential effects of, for example, unfa-
demand? Respect for persons, honesty, beneficence miliar surroundings, pain, anxiety and tiredness.
and equity are likely to be uncontroversial precepts Capacity is not simply a free floating legal state:
by which to practise but what does that mean in rela- it assumes meaning and purpose in relation to spe-
tion to assessing capacity? cific decisions. As such, the assessment of capacity
First, no professional should engage in an assess- must be carried out with reference to the particular
ment of a patient’s capacity without understanding decision to be made e.g. with reference to the specific
the relevant legal framework in his or her jurisdic- intervention or treatment proposed. The professional
tion (British Medical Association and The Law So- carrying out the assessment should establish to what
ciety, 1995). Indeed, so ambiguous is the language end a capacitous decision is being sought. Similarly,
of assessing capacity, that some have sought to dis- professional(s) asking for assessments of capacity
tinguish between separate legal terminology and should clarify exactly what is being asked of the pa-
“bioethical” terminology as a means of differentiat- tient and why.
ing lawful practice from ethical practice (Schneider Medicine is naturally concerned with diagnoses
and Bramstedt, 2006). Therefore a basic but funda- and categorisation, yet in the assessment of capacity6
mental stage in “virtuous practice” is to ensure that pre-existing diagnoses may inhibit ethical practice.
all members of the team are talking about the same The assessment of capacity should be unrelated to
task when discussing or engaging in assessments of any pre-existing diagnoses, including those of cogni-
capacity. If, as is likely to be the case when working tive impairment or disorder (EDCON, 2006). The fact
with people of impaired cognition, lucidity is variable that a person has been diagnosed with a particular
and expressions of preference confusing, it is essen- disorder does not inevitably mean that an assess-
tial to maximise the chances of everyone in the team ment of capacity should be made. The assessment of
contributing to an optimal assessment of capacity. capacity is concerned with a person’s ability to decide
Given the importance of the task and the conse- and not with diagnostic labels.
quences of a determination of capacity for a person’s Patients may be uncooperative when a profes-
self-determination, it should be a common goal for sional seeks to conduct an assessment of capacity, but
all staff to facilitate rather than impede capacity. For refusal to cooperate does not mean that the patient
if assessment of capacity is not a single, irrevocable can be assumed to be incapacitous. Therefore pro-
and static judgement, each member of the team may fessionals may need to be imaginative and patient in
attempts to engage patients in capacity assessments.
5
Although it is important to note that in the UK, adults are
6
presumed to be capacitous and an assessment should only It is not only in the assessment of capacity that a pre-exist-
be conducted where there is legitimate doubt about a pa- ing diagnosis of dementia that may be inhibited, but the
tient’s decision-making capacity. treatment offered to patients (Gallagher and Clark, 2002).
53
For example, close attention to influencing factors such ford et al., 2003; Parmentier et al., 2007) to practical
as the way in which explanations are given, a profes- challenges of applicability (Gallagher and Clark, 2002;
sional’s manner and demeanour and the surrounding Hughes and Baldwin, 2006). Once again, the virtuous
environment can all enhance a patient’s potential for healthcare team will discuss the role of advanced de-
capacity. The virtuous professional (Toon, 2006) there- cision-making and substituted judgement to make
fore will seek to maximise a patient’s ability to under- explicit how connectedness is perceived by patient,
stand information by explaining it in clear and simple carers and professionals. What values were impor-
language and being as reassuring as possible. Options tant to the person when they were capacitous? How
that can be explored to maximise a patient’s under- do those values, or what Dworkin calls “critical inter-
standing include treating an underlying condition that ests” (Dworkin, 1993) relate to the pleasures of the in-
is inhibiting decision-making, writing down informa- capacitated person? Is there connectedness between
tion, drawing diagrams, using educational models, vid- previous interests and current interests? As with the
eos and audiotapes, using translators, letting the pa- “assessment of capacity” itself, the development or
tient choose a friend or relative to be present7, finding implementation of advanced statements is not in
a private place for the consultation, remaining alert to itself a “moral” act, but can become so once profes-
confidentiality (Hughes et al., 2002) and, where appro- sionals reflect on the ethical basis for preferences ex-
priate, considering the use of a validated, structured pressed in anticipation of declining capacity.
tool such as the MacArthur Competence Assessment
Tool for Treatment8 (Grisso et al., 1997; Grisso and Ap-
pelbaum, 1998) which research has recently shown to 3 Autonomy: an unhealthy ethical pre-
have validity in assessing the capacity of older patients occupation?
in the UK (Eastman and Starling, 2006).
Finally, healthcare professionals may have an im- Whilst determinations of capacity open the door
portant role in maximising capacity by considering to legal rights and privileges, the ethical premise on
the place of advanced statements. Whilst advance which assessments of capacity occur warrants atten-
statements have variable legal status in differing ju- tion. The assessment of capacity is commonly said
risdictions, there are common challenges attendant to be the legal embodiment of the moral principle
upon expressing preferences in anticipation of future of autonomy. But is “autonomy” really indicative of
loss of capacity, ranging from philosophical ques- moral principle? And if “autonomy” does have inher-
tions about whether connectedness is intrinsic to the ent moral value, what is it and why is it so?
meaningful discharge of prospective autonomy (Ful- The arguments that accompany ethical discus-
sions relating to facilitating patient autonomy focus
7 on principles of self-determination. Yet, embedded in
Clearly, a professional should have due regard to the prin-
ciples of confidentiality and not assume that a patient is the notion of self-determination, which is not inher-
content for friends or relatives to be present. ently morally valuable, are moral assumptions about
8
The “MacCAT-T” is a tool devised by two American psy- personhood, the nature of human relationships and
chiatrists: Thomas Grisso and Paul S. Appelbaum. The tool the aims of healthcare. Respect for autonomy too
comprises a structured interview following a consistent often depends on a shared definition of personhood
format in which questions are phrased in a defined way characterised by the ability to remember, compre-
and predetermined cues used to elicit information whilst
hend often complex information that might be poor-
applying a quantitative rating. The interview covers the
patient’s: (i) appreciation of his or her disorder; (ii) under-
ly communicated by over-worked professionals and
standing of treatment and risks/benefits; (iii) knowledge express preference. Those who advocate “respect for
of alternative treatments; (iv) reasoning; and (v) ability to autonomy” as their sole moral guide too readily as-
express a choice. sume constancy of identity, experience and continu-
54
ity of narrative that may be inapplicable to the person allowing the professional to be alert to, and develop,
with cognitive impairment yet who is able to convey the beneficent aims of virtue ethics (Price and Bow-
preference (Kitwood, 1997; Hughes, 2001). man, 2007). The professional-patient relationship is
Too often invocations of autonomy construct redrawn and all who care about the well-being of an
human relationships in a separatist way – individu- individual embark upon a shared enterprise of facili-
als making personal choices in a social vacuum that tating choice and the expression of preference. The
neither considers nor accounts for the complex, empower imbalance embedded in the “assessment of
bedded context in which most human interaction oc- capacity” model in which a professional determines
curs, particularly when illness renders one vulnera- whether a person is or is not to be able to make deci-
ble (Verkerk, 2001; Price and Bowman, 2007). Indeed, sions is replaced with compassion and respect. Such
even in the case of the so-called competent patient, an approach may assist healthcare professionals who
heuristic influences on decisions renders the notion are untowardly distracted by seeking the “lost” per-
of the rational decision taken on the basis of infor- son whilst addressing relatives’ concerns which may
mation questionable (Schwab, 2006). In the context not always appear desirable or even ethical (Pucci et
of people with dementia, autonomy, or at least the al., 2003). The antipathy to the humane, psychologi-
version of it that dominates Western bioethics dis- cal and caring aspects of healthcare that, controver-
course, may not the most persuasive or frankly use- sially, some (male) commentators have described as
ful moral principle to inform practice depending as a “masculine” approach (Marinker, 1998, p. 70) is ren-
it does on these assumptions that do not account for dered unethical. “Relational autonomy” renders the
the experiences of many people with dementia and assessment of capacity one of several moral factors
their carers9 who are struggling not with life-chang- to be considered in a wider “ethic of care” in which
ing, one-off events requiring a definitive decision, but the interests of people with dementia are consid-
with the daily demands of preserving dignity, maxim- ered with parity of attention to context, carers and a
ising independence and adjusting to change (Ekman changing situation in which roles and priorities shift
and Norberg, 1988; Hughes et al., 2002; Pucci et al., (Verkerk, 2001).
2003; Gatmans and Milisen, 2006). In a thought-provoking analysis, Post (2006)
uses the term “respectare” to plead for a collective
revisiting of how people with impaired capacity are
4 Alternatively autonomous: other ethical treated. Post argues for moral recognition of what he
models for decision-making calls people’s “essential humanity” whatever cogni-
tive decline may have occurred as a consequence of a
Autonomy then may be a useful moral principle when dementing process suggesting that to do otherwise is
considering the question of capacity in people with to accede to the “moral blindness” of “hypercognitive
dementia only if one adopts a relational rather than snobbery” (Post, 2006, p. 223). Such a starting posi-
functional model of personhood and locates decision tion avoids the perhaps logical, but disarming, con-
making in the wider empirical social context (Sarto- clusions of philosophical perspectives that depend
rius, 2002; Eastman and Starling, 2006; Oppenheimer, on functional models of personhood and expressions
2006; Price and Bowman, 2007). What alternative of preference as individualised episodes of unmitiga-
ethical theories and models might be useful? ted autonomy. An ethos of communitarian inclusion
Relational ethics of care (Noddings, 2003; Sadler, instead replaces the binary and definitive construct
2005) prioritise interaction between people, thereby of healthcare professional assessing capacity and
permitting or denying illusory “self-determination”
9
And the dilemmas of carers may be quite different from depending whether a person meets the “test” of ca-
those of professionals (Hughes et al., 2002) pacity applicable in his or her jurisdiction.
55
Moreover, a communitarian, respectful and inclu- ter of those professionals who work with patients and
sive moral world is not merely beneficial for those in families. Put simply, being open to ways of knowing
whom cognitive function is impaired and for whom about disease makes it more likely a professional will
“capacity” becomes a frustratingly elusive target. Nor be open to multiple ways of facilitating ethical deci-
does such a perspective merely enhance the likeli- sion-making rather than depending on the rule based
hood of “virtuous” healthcare professionals who “assessment of capacity” prototype which mirrors
recognise the limits of relying exclusively on super- narrow biomedical approaches to nosological cate-
ficial invocations of autonomy as their ethical guide. gorisation.
A moral community in which diversity of function is
noted, shapes care but does not irrevocably deter-
mine choices allows for recognition of the over-stated 5 Conclusion: compassionately engaging
divide between pathology and normality that so often with capacity
imbues healthcare discourse. The positivist tendency
artificially to delineate between disease and health The title of this chapter sums up the challenge for
thereby representing medical knowledge as constant, those working with people who have dementia: the
certain and unchallengeable has been challenged general trend to constructing the moral question as
since Kuhn (1962) first exposed how chemists and a matter of who decides about a person’s care seduc-
physicists reinterpret and differently understand the tively but dangerously elides multiple moral assump-
same scientific “fact” (Bowman, 2007). tions that warrant close attention. First, the assump-
Noting that biomedical knowledge and there- tion is that someone will prevail in the quest to make
fore practice are socially constructed and shaped by decisions, be it the patient, the clinical team or, as
prevailing cultural norms is not revelatory, so why in- substituted judgement becomes commoner, a proxy.
clude it at all in a chapter on ethics and capacity? The There is implied potential for adversary between the
answer, for this author, lies in the sense of “otherness” parties who seek to be the voice that prevails. Further
that the certainty of the positivist discourse of bio- the assumption that the question should be ‘who de-
medicine allows for that might shape how healthcare cides’ rests, of course, on another assumption, name-
professionals respond to people with dementia and ly that there is an effective mechanism by which to
their carers. The sort of communitarian moral frame- allocate the decision-making role fairly – and that
work in which respect, care and person-centred, con- mechanism is generally taken to be the assessment
textual decision-making depend less on an ability to of capacity.
meet the formal rules of “capacity” and more on the To some extent, the unquestioned emphasis on
imagination, patience and sensitivity of the profes- capacity assessment is understandable for the as-
sionals posited by Kitwood (1997) and Post (2006) sessment of capacity is essential to ethical medical
exposes the continuum of “memory status” across practice – but only because it has been constructed
people of all sorts, with and without, formal diag- thus, partly by law, partly by the conventions of medi-
noses of “dementia”. No longer is “dementia” a state of cine and partly by the language of medical ethics. The
“otherness” but represents one point on a distribution tendency to embrace guidelines and tools for assess-
curve of variable cognitive function and impairment ing capacity, however excellently drafted, grounded
(Harding and Palfrey, 1997). It is a dynamic but not in legal principle or well-validated, and to treat such
determinative state and most importantly of all, it is guidance as a clinical recipe book is flawed because it
a familiar not an alien state. Thus an inclusive, open obscures the ethical roots of what, it is argued, profes-
understanding of cognition, impairment, social rela- sionals must reflect on and discuss in order to facili-
tionships and care enhance not only the experiences tate decision-making with their patients irrespective
of patients and their families, but the moral charac- of diagnosis, cognitive status or proposed treatment.
56
There is no inherent moral magic in the words Thus, the challenge for all healthcare profes-
“capacity” or “autonomy”. Yet in the sometimes over- sionals is to revisit their moral roots or perhaps even
whelmingly demanding environment of healthcare, it discover them for the first time! Ethical develop-
is perhaps understandable if professionals prefer the ment, like any area of professional development, is a
apparent simplicity of attributing “capacity status” process in which values, principles, evidence, anec-
whilst invoking phrases such as “respecting autono- dote and empirical reality are exposed, shared, chal-
my” or “acting in best interests due to lack of auton- lenged and reconsidered (Bowman, 2005). In other
omy” to support these immensely difficult decisions. words, it is not a process that is easily fitted into a
But, to be seduced, however understandably, by the busy working day which possibly explains why the
apparent answers of a thorough capacity assessment assessment of capacity may become the ethico-le-
is ultimately to diminishing to patients, carers and gal panacea without due attention to its ethical un-
even what it means to be a professional (Durkheim, derpinning. However, it is only by making time and
1957; Cruess et al., 1999; Hoff, 2000; Arnold and Stern, space to reflect on what it means to be human, to
2006). Without overt and considered attention to the make choices, to care and perhaps ultimately to be
reasons why moral value is afforded to one version a healthcare professional serving others will prac-
of care over another version of care, the healthcare titioners maximise the chances that the constant
professional who conducts assessments of capacity flow of challenging decisions they facilitate and
is engaging in the ethical equivalent of prescribing take daily are justifiable both externally and perhaps
without understanding anything about the mecha- more importantly internally. Indeed, moving beyond
nism of action or side effects of the drug. a mantra-like invocation of the word “autonomy” to
To continue the pharmacological metaphor, as- consider some of the questions and challenges raised
sessing capacity has an important place in the care of in this chapter with colleagues may even bring suffi-
people with dementia, but it is potent, has been clev- cient ethical peace to ensure a good night’s sleep!
erly marketed invoking the language of ethics and
law but may have significant side effects if it is not
well understood. The potency of the assessment of References
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59
Chapter 6
ARE LEGAL SYSTEMS IN EUROPE FIT FOR THE DEMENTIA CHALLENGE?

APPROACH OF THE COUNCIL OF EUROPE
Nicole Kerschen1
1 Introduction Between April 1997 and November 2006, thirty-

four states6 signed the Convention, but only part of
Are legal systems in Europe fit for the dementia challenge? them ratified it. Application needs ratification. Ratifi-
The answer to this question is given by the Council of cation means that national law conforms to the Con-
Europe2, which aim is to protect the individual’s dig- vention. Conformity may be achieved either by apply-
nity and fundamental rights in general, and more spe- ing directly the Convention’s provisions in domestic
cifically with regard to the application of biology and law or by enacting the necessary legislation to give
medicine. Principles and legal standards were drawn effect to them.
up in the “Convention on human rights and biomedi- The European Convention on human rights
cine”3. This Convention is the first legally binding in- and biomedicine applies in the following European
ternational text designed to preserve the human being countries: Bulgaria (2003), Croatia (2004), Cyprus
against the misuse of biological and medical advances. (2002), Czech Republic (2001), Denmark (1999), Es-
It was adopted by the Committee of Ministers of the tonia (2002), Georgia (2001), Greece (1999), Hungary
Council of Europe on 19 November 19964 and opened (2002), Iceland (2005), Lithuania (2003), Moldova
for signature in Oviedo on 4 April 1997. It is founded (2003), Norway (2007), Portugal (2001), Romania
on the same approach, the same ethical principles and (2001), San Marino (1999), Slovakia (1999), Slovenia
the same legal concepts than the Convention for the (1999), Spain (2000) and Turkey (2004)7. It must be
protection of human rights and fundamental freedoms noted that France, Germany and Great-Britain do not
of 4 November 1950 from the Council of Europe5. belong to this list. They played an important role in
the leadership of the Steering Committee on Bioeth-
ics (CDBI), which drafted the text. France signed the
1
Nicole Kerschen (nkersche@u-paris10.fr) coordinated Convention, but did not ratify it afterwards. Germany
LAWNET I, a study on the rights of people with Alzhei-
and Great Britain did not even sign it.
mer’s disease, for Alzheimer Europe: www.alzheimer-
europe.org/?lm1=17EE9410D104.
The main principle of the Convention is present-
2
46 European states belong as member states to the Council ed in Part 2; it is applied, in Part 3, to consent in case
of Europe.
3 6
Convention for the protection of human rights and dignity Bosnia and Herzegovina, Bulgaria, Croatia, Cyprus, Czech
of the human being with regard to the application of biolo- Republic, Denmark, Estonia, Finland, France, Georgia,
gy and medicine: www.coe.int/T/E/legal_affairs/legal_co- Greece, Hungary, Iceland, Italy, Latvia, Lithuania, Luxem-
operation/bioethics/ bourg, Moldova, Netherlands, Norway, Poland, Portugal,
4
Belgium and Germany abstained from voting on the adop- Romania, San Marino, Serbia, Slovakia, Slovenia, Spain,
tion of the Convention. Sweden, Switzerland, Macedonia, Turkey, Ukraine (as
5
Other international instruments are mentioned in the pre- member states of the Council of Europe) and Montenegro
amble of the Convention, like the Universal Declaration of (as a non-member state of the Council of Europe).
7
human rights of the United Nations (10 December 1948). The year of the entry in force is put in brackets.
Chapter 6: N. Kerschen
of intervention in the health field; in Part 4, its appli- must come directly after the interests of the individ-
cation in the special field of research is analysed8. In ual. The aim of the Convention is to shield the indi-
each part, the answers to the following questions are vidual from any threat resulting from the improper
highlighted: How do principles apply to persons with use of scientific developments.
dementia? How are these people protected, if they are All articles must be interpreted in the light of the
unable to consent?9 principle of primacy of human being. This is the
originality of the approach of the Council of Europe.
It must be said here, that Article 27 gives the states
2 Main principle of the Convention: primacy the possibility to grant a wider measure of protection than
of the human being is stipulated in the Convention. What does “a wider meas-
ure of protection” mean? The text lays down common
The purpose of the Convention is that all countries standards with which the states must comply, while
“shall protect the dignity and identity of all human be- allowing them to provide greater protection of the hu-
ings and guarantee everyone, without discrimination, man being and of human rights with regard to applica-
respect to their integrity and other rights and funda- tions of biology and medicine. What if a conflict arises
mental freedoms with regard to the application of bio- between various rights established by the Convention?
logy and medicine”. Article 1 restricts the scope of the For example, between a scientist’s right of freedom of
Convention to human biology and medicine, thereby research and the rights of a person submitting to the re-
excluding animal and plant biology insofar as they search? The expression “a wider measure of protection”
do not concern human biology or medicine. But the must be interpreted in the light of the purpose of the
Convention covers all medical and biological applica- Convention, as defined in Article 1, namely the protec-
tions concerning human beings, including preventive, tion of the human being with regard to the application
diagnostic10, therapeutic and research applications. of biology and medicine. As a consequence, any addi-
The Convention recognises, in Article 2, the pri- tional protection can only mean greater protection for
macy of the human being. It is said that “the interests the person submitting to research.
and welfare of the human being shall prevail over the
sole interest of society or science”. What does it mean?
Interests at stake are not equal. In principle, priority
3 Consent in case of an intervention in the
is attached to the interests of the individual opposed
health field
to those of the science or society. But the adjective
“solely” means that the interests of science or society The Convention provides, in Chapter II on consent,
8
rules for five different cases:
We decided to exclude consent in case of transplantation
purposes.
9
For the purposes of this chapter, we used the Explanatory – consent of a person able to consent (Article 5)
Report to the Convention on human rights and biomedi- – protection of a person unable to give consent
cine from the directorate of legal affairs of the Council of (Article 6)
Europe. Strasbourg, May 1997. – special situation of a person with mental disor-
10
Nicole Kerschen, L’individu, maître de ses choix en ma- der (Article 7)
tière biomédicale (approche européenne): L’exemple du – emergency issues (Article 8)
diagnostic précoce dans la maladie d’Alzheimer. 3e Assises
– the case of previously expressed wishes
des Consultations de la Mémoire; Paris, 1–2 février 2002 et
Conférences internes de la Clinique de Psychiatrie géria-
(Article 9).
trique des Hôpitaux Universitaires de Genève (Prof. Gian-
nakopoulos); Genève, 9 mai 2003. Ronéo 9 pages et an- General rules are first highlighted. Secondly, the ap-
nexe. plication of the main principle in special situations
62
Are legal systems in Europe fit for the dementia challenge? Approach of the Council of Europe
is analysed. Finally, the case of previous expressed as invasive diagnosis, acts or treatment, express con-
wishes is presented. sent may be required. Moreover, expressed specific
consent must be obtained from a person participat-
ing in research (see Part 4).
3.1 General rules Finally, freedom of consent implies that consent
may be withdrawn, at any time, by the person. The
Consent of a person able to give consent
decision of the person may be respected once he or
Article 5 presents a very simple principle: no one may she has been fully informed about the consequences.
be forced to undergo an intervention in the health field But professional standards and obligations, as well as
without his or her consent. The term “intervention” rules of conduct that apply in such cases, may oblige
must be understood in a broad sense: it covers all doctors to continue the intervention so as to avoid
medical acts, in particular interventions performed seriously endangering the patient’s health.
for the purpose of preventive care, diagnosis, treat-
ment and rehabilitation or in a research context. All Protection of a person not able to consent
interventions must be performed in accordance with The principle laid down in Article 6 is the following:
the law, supplemented and developed by professional an intervention may only be carried out on a person,
rules. who does not have the capacity to consent, for his or
Human beings must be freely able to give or her direct benefit. Deviation from this principle is
refuse their consent. This approach is based on pa- possible in case of medical research (see Part 3).
tient’s autonomy in relationship with healthcare A difference is made between individuals unable
providers. It restrains the paternalistic approach, in to give full and valid consent to an intervention due
which the patient’s wish might be ignored. Consent to their age (minors) and individuals unable to con-
must be free and informed. sent due to their mental incapacity (adults). We focus
The patient’s consent is considered to be free on the second instance.
and informed if it is given on the basis of objective Firstly, the incapacity to consent referred to in
information from the responsible healthcare profes- Article 6 must be understood in the context of a giv-
sional as to the purpose and the nature of the inter- en intervention. However, account has been taken
vention, as well as on the potential consequences and of the diversity of legal systems in Europe. In some
risks of it, or of its alternatives (Article 5 §2). But the countries, the patient’s capacity to consent must be
elements enumerated in this article are not an ex- verified for each intervention; in other countries, a
haustive list. Informed consent may apply, according person may be declared legally incapacitated which
to the circumstances, additional elements, as for ex- implies incapacity of consenting to one or more types
ample the risks related to the individual characteris- of act. As the purpose of the Convention is not to in-
tics of each patient, such as age or existence of other troduce a single legal system for the whole of Europe,
pathologies. but protect people who are not able to give their con-
Moreover, information must be sufficiently clear sent, reference has been made in the text to domestic
and suitably worded for the person, who is to under- law, which will determine, in each country, whether
go the intervention. The individual must be put in a or not a person is capable for consenting to an inter-
position that he or she could weigh up the necessity vention.
or usefulness of the aim and methods of the interven- In order to protect the fundamental rights of hu-
tion against the risks, the discomfort or the pain it man beings and to avoid the application of discrimi-
will cause. natory criteria, Article 6 §3 lists the reasons why an
Consent may take various forms. It may be ex- adult may be deprived of his or her capacity of au-
pressed (verbal or written) or implied. In some cases, tonomy under domestic law: a mental disability, a
63
disease or similar reasons. It must be noted that age the treatment of patients suffering from mental dis-
has not been listed as a reason. The term “similar rea- orders: “a person who has a mental disorder of a serious
sons” refers to situations such as accidents or states nature may be subjected, without his or her consent, to
of coma, where the patient is unable to formulate his an intervention”.
or her wishes or to communicate them. Article 7 constitutes an exception to the general
If adults have been declared incapable, but for a rule of consent for persons able to consent (Article 5).
moment do not suffer from a reduced mental capac- It applies only to persons, who are capable to consent,
ity, they must themselves consent. but whose ability to decide on a proposed treatment
Secondly, when an adult is not capable of con- is severely impaired by their mental disorder. If a per-
senting to it, the intervention may only be carried out son with mental disorder is not capable for consent-
with the authorisation of his or her legal representative, ing, authorisation for treatment must be given under
or any person, authority or body provided for by the law the conditions of Article 6.
(Article 6 §3). It must be noted that family members But Article 7 also guarantees the protection of
or relatives may only intervene if they are legal rep- these persons by submitting treatment for their men-
resentatives. But participation of adults not able to tal disorders without their consent to specific condi-
consent in decisions must not be totally ruled out. tions. It must be noted that it does not apply in case of
Therefore, Article 6 §4 foresees the obligation to in- specific emergency situations mentioned in Article 8.
volve the adult in the authorisation procedure when- Four conditions must be fulfilled.
ever possible. The first condition is that the person must be
Thirdly, the representative, authority or body, suffering from a mental disorder of a serious nature,
whose authorisation is required for the intervention, which means that an impairment of the person’s
must be given adequate information about the conse- mental faculties must be proven.
quences and risks involved. The same conditions ap- The second condition is that the intervention
ply, as in Article 5, for a person able to give consent. must be aimed at treating specifically the mental dis-
Finally, the authorisation may be withdrawn by order of the person, which means that for all other
the representative, authority or body, at any time, interventions the practitioner must seek the consent
provided that this is done in the best interest of the per- of the patient. If a person capable of consent refuses
son not able to consent. The condition of “best interest” an intervention not aimed at treating her or his men-
is very important. While a person capable of giving tal disorder, the opposition must be respected in the
consent to an intervention has the right to withdraw same way as the opposition from other patients ca-
that consent freely, even if it appears to be contrary pable of consent.
to his or her interest, an authorisation given by a rep- The third condition is that the absence of treat-
resentative, authority or body must be retractable ment must seriously harm his or her health. Such a risk
only if this is in the interest of the person unable to exists when a person is a danger for himself or herself,
consent. This condition is in line with the objective for example in case of attempt committing suicide.
of protecting the person. Domestic law should also Article 7 is not concerned, when patients are a risk
provide adequate recourse procedures. for other persons’ rights or freedoms, for example in
event of violent behaviour. Article 7 protects, on one
hand, the patient’s health and, on the other hand, the
3.2 Special situations patient’s autonomy. Intervention without consent is
only allowed if there is a serious risk for the person’s
Protection of persons with mental disorder
health.
Article 7 deals with a special question, which may be The fourth condition is that prospective condi-
important in case of dementia. This question is about tions prescribed by national law must be observed.
64
These conditions include supervisory, control and ap- Previously expressed wishes must be taken into
peal procedures. account. This does not mean that they should be
necessarily followed. Wishes expressed a long time
Emergency situations before the intervention and science progress may be
In these situations, doctors may face a conflict of du- grounds for not following the patient’s opinion.
ties between their obligation to provide care and their
obligation to seek the patient’s consent. Article 8 al-
lows them, in such situations, to carry out immediate- 4 Application in the special field of research
ly any necessary medical intervention for the benefit of
the health of the individual concerned, without waiting The Convention provides, in Chapter V on scientific
until the consent of the patient or the authorisation research, rules for persons undergoing research (Arti-
of the legal representative, authority or body, where cles 15 to 17). In this field, an additional protocol was
appropriate, can be given. drawn up with the purpose to develop further the
As Article 8 departs from the general rules (Ar- principles contained in the Convention. It must be
ticles 5 and 6), its application is submitted to special noted that it could not depart from the provisions of
conditions. the Convention. Moreover, it could not lay down rules
Firstly, the possibility is restricted to emergencies affording human beings less protection than that re-
that prevent the practitioner from obtaining the appro- sulting from the principles of the Convention.
priate consent. It applies, on the one hand, to persons The Additional Protocol to the Convention on
capable for consent, and on the other hand, to persons human rights and biomedicine concerning biomedi-
unable to consent. In the last case, a doctor may be un- cal research was adopted by the Committee of Min-
able to contact a legal representative, authority or body, isters of the Council of Europe on 30 June 2004 and
who would have to authorise an urgent intervention. opened for signature in Strasbourg on 25 January
Secondly, the possibility is restricted to medical- 2005. To enter in force it needs five ratifications. In
ly necessary interventions which cannot be delayed. November 2006, twenty-one states have signed it11,
Therefore, interventions for which a delay is accept- but only three have ratified it – Bulgaria, Slovakia
able are excluded. and Slovenia – which means that it is not yet in force.
Lastly, the intervention must be carried out for France, Germany and Great Britain did not sign it.
the immediate benefit of the individual concerned. Before explaining the applicable rules, we must
define the term “biomedical research” and highlight
some of the fundamental principles12.
3.3 Case of previously expressed wishes
Article 9 lays down the following principle: The pre-

viously expressed wishes, relating to a medical inter- 11
Bosnia and Herzegovina, Bulgaria, Denmark, Georgia,
vention by a patient who is not, at the time of the inter- Greece, Hungary, Iceland, Italy, Lithuania, Luxembourg,
vention, in a state to express his or her wishes, shall be Moldova, Norway, Portugal, Romania, Serbia, Slovakia,
taken into account. Slovenia, Sweden, Turkey, Ukraine (as member states of
This Article covers all situations where individu- the Council of Europe) and Montenegro (as a non-member
state of the Council of Europe).
als, capable of understanding, have foreseen that they 12
For the purpose of this chapter, we used the Explanatory
might be unable to give their valid consent and have Report to the Additional Report to the Convention on
previously expressed their consent (assent or refus- human rights and biomedicine concerning biomedical
al). It applies in case of emergency, but also in case of research of the Directorate General I, Legal Affairs. Stras-
progressive diseases like Alzheimer’s disease. bourg, 25 January 2005.
65
Definition of biomedical research Fundamental principles
The Additional Protocol defines its scope as “the full The preamble of the protocol affirms the commit-
range of research activities in the health field involving ment of the countries, which are parties to it, to take
interventions on human beings”. necessary measures to safeguard human dignity and
How can we distinguish medical research from the fundamental rights and freedoms of human beings
medical practice, especially innovative medical prac- with regard to biomedical research. The principle of
tice? In medical practice, the sole intention is to bene- primacy of the human being applies here, which
fit the individual patient, not to gain knowledge of means that in the event of a conflict between the hu-
general benefit. In biomedical research, the primary man being participating in research and the interest
intention is to advance knowledge so that patients of science or society, priority must be given to the
in general may benefit, while an individual research former.
participant may or may not benefit directly. The protocol recognises the freedom for scien-
What do “research activities” include? The proto- tists to carry out biomedical research. Freedom of
col covers research into molecular, cellular and other biomedical research is justified not only by humani-
mechanisms in health, disorders and disease, carried ty’s right to knowledge, but also by the considerable
out by doctors, biologists and other professionals progress its results may bring in terms of health and
such as psychologists. It includes diagnostic, thera- well-being of patients. But such freedom is not ab-
peutic, preventive and epidemiological studies as far solute. It is limited by the fundamental rights of in-
as they involve interventions on the human being. dividuals expressed by the provisions of the Conven-
Moreover, all aspects of the research project from the tion and the Additional Protocol.
beginning to the end, even selection and recruitment
of the participants are included.
What does “intervention on human beings” mean? 4.1 Protection of persons undergoing research
The protocol states that, for its purpose, the term of
“intervention” covers, on the one hand, physical inter- All persons undergoing research are given protection.
ventions, and on the other hand, other interventions The Convention, in Article 16, states that “research on
when they involve a risk for the psychological health a person may only be undertaken if all the following
of the person concerned. The last include question- conditions are met”. Five conditions must be fulfilled
naires, interviews and observational research taking for all research on human beings. Consent is one of
place in the context of a biomedical research proto- these conditions.
col, when some questions are of an intimate nature The first condition is that there must be no al-
capable of resulting in psychological harm (sexual ternative of comparable effectiveness to research on
history, psychiatric disorders, rare genetic diseases, humans. What does this mean? It means that re-
family medical histories…). search will not be allowed if comparable results can
What kind of research is excluded? First, the pro- be obtained by other means, or that invasive methods
tocol does not address research on the bodies or body will not be authorised if less invasive or non-invasive
parts of deceased persons. Therefore, research on the methods can be used with comparable effect.
brain of Alzheimer’s patients after their death is ex- The second condition is that the risks that may
cluded. Second, the scope of the protocol does not be incurred by the person are not disproportionate to
extend to studies whose purpose is not to gain new the potential benefits of the research.
scientific knowledge, but to collect or to process in- The third condition is that the research project
formation for purely statistical purposes such as for needs to be approved by a competent body after an in-
audits or monitoring of the healthcare system. dependent examination of its scientific merit, includ-
66
ing assessment of the importance of the aim of the the sphere of biomedical research, implicit consent is
research and multidisciplinary review of its ethical insufficient. There must be a written consent. “Speci-
acceptability. fic consent” means that consent has to be given to one
The fourth condition is about the information particular intervention carried out in the framework
of the person undergoing research. She or he has to of research. Such consent may be freely withdrawn by
be informed in advance of her or his rights and the the person at any phase of the research.
safeguards prescribed by domestic law for his or her The protocol adds that the refusal of consent
protection. or the withdrawal of consent to participation in re-
The protocol has developed the protection of search shall not lead to any form of discrimination
the person undergoing research in the field of infor- against the person concerned, in particular regarding
mation. A person asked to participate in a research the right to medical care. The participant should not
project shall be given adequate information in a com- be required to give a reason for withdrawal.
prehensive form. The protocol does not require that The protocol foresees the situation, where the
the information should be given by a specific person. capacity of the person undergoing research is in doubt,
This should be determined by the nature of the re- while the person has not been declared legally inca-
search, the needs of the potential participant, the na- pable of giving consent by a legal body. It requires
tional practice or the national law. The information arrangements to be put in place to verify whether
must be sufficiently clear and comprehensible for the a potential research participant has the capacity to
person undergoing research. It should be provided in give informed consent. These arrangements could
a way to make it understandable taking into account be developed and implemented through profession-
the level of knowledge, education and psychologi- al standards. It must be noted, that, in these cases,
cal state of the potential participant. It shall also be the scientist is responsible for verifying the capacity
documented, which means that it must be recorded of the participants from whom he obtains consent.
(written, video, audio recordings). The person shall Information on arrangements for such verification
be given enough time to review the information. in the context of a specific research project should
Information shall cover the purpose, the overall be submitted to the ethics committee reviewing the
plan and the possible risks and benefits of the re- project.
search project. Information on the risks involved in
research must cover any risk related to the individual
characteristics of each participant, such as age or the 4.2 Protection of persons unable to consent to
presence of other disorders. It should also include research
the opinion of the ethics committee. The protocol
First of all, general rule of Article 6 applies in the field
enumerates eight different items that have to be ad-
of biomedical research. Moreover, people unable to
dressed through information.
consent are given a special protection. The Conven-
In addition, the protocol states that the person
tion establishes a principle and an exception.
must be informed of her or his right to refuse consent
or to withdraw consent at any time without being sub-
Principle
ject to any form of discrimination, in particular regard-
ing the right to medical care. The results of a biomedical research carried out on
The fifth condition is on consent. According to the a person unable to consent must have the potential
general rule of Article 5, human beings must consent to produce real and direct benefit to the person’s
to each intervention in the health field. This applies to health (Article 17 § 1). This applies in the field of re-
research activities. The necessary consent must have search the principle laid down in Article 6 for all in-
been given expressly, specifically and documented. In terventions in the health field, which means that an
67
intervention may only be carried out on a person, who dignity of the person, in the field of research, in all
does not have the capacity to consent, for his or her di- circumstances, even if the person is legally incapable
rect benefit. to give consent. He or she may object by verbal or non
But the application of this principle is not verbal means. If the person is unable to express him-
enough. Research on a person without the capacity to self or herself, the opinion of the caregiver should be
consent may be undertaken only if all the conditions taken into account in interpreting his or her wishes.
applicable to persons able to consent are fulfilled (no
Exception
alternative to research on humans, no risk/benefit
disproportion, prior approval of the research project, A research, which has not the potential to produce
adequate information) plus three specific conditions. results of direct benefit to the health of the person
The first specific condition is that research of concerned, may be authorised exceptionally and
comparable effectiveness cannot be carried out on indi- under the prospective conditions prescribed by
viduals capable of giving consent. There should be no domestic law (Article 17 §2).
alternative individual with full capacity, which means This exception is justified by the fact that all
that recourse to research on persons unable to con- research on mentally disabled persons or persons
sent must be scientifically the sole possibility. This is suffering from dementia would otherwise be impos-
the case for research aimed at improving the under- sible. It is the aim of such research to benefit persons
standing of diseases like Alzheimer’s disease affect- in those groups through a better understanding of
ing these people specifically. Such research can only the factors which will help to maintain and improve
be carried out on adults with dementia. health and wellbeing or through a better understand-
The second specific condition is that an authori- ing of disease processes. The Convention and the Pro-
sation of his or her legal representative, authority or tocol enable persons in these categories to enjoy the
body, provided for by the law, has been given specifical- benefits of science while guaranteeing the individual
ly and in writing. The legal representative, authority protection of the person undergoing research.
or body must be informed under the same conditions Research without direct benefit will be author-
that apply to persons able to consent. Moreover, the ised only if all the conditions applicable to persons
information shall be submitted to the person con- unable to consent are fulfilled, except the “no risk/
cerned, unless he or she is not in a state to receive the benefit disproportion” of cause (no alternative to
information. It should also be provided to a caregiver research on humans, prior approval of the research
or a family member, when appropriate. An adult not project, adequate information, no alternative of re-
able to consent shall as much as possible be involved search on individuals incapable of giving consent,
in the authorisation procedure. authorisation by a legal representative, no objection
The protocol adds that the person’s previously by the person) plus two additional conditions.
expressed wishes or objections must be taken into The first additional condition is that the research
account. Advanced directives are not mentioned, but has the aim of contributing, through significant im-
they may be recognised as a possible way of clarifying provement in the scientific understanding of the indi-
a person’s wishes. vidual’s condition, disease or disorder, to the ultimate
The authorisation given by a legal representa- attainment of results capable of conferring benefit to
tive, authority or body may be freely withdrawn at the person concerned or to other persons in the same
any time. age or afflicted with the same disease or disorder or
The third specific condition is that the person having the same condition.
concerned does not object. This rule prohibits the car- The second additional condition is that the re-
rying out of the research against the wish of the per- search entails only minimal risk and minimal burden
son. It reflects a concern for the autonomy and the for the individual concerned. While Article 16 restricts
68
research in general by establishing a criterion risk/ take place. This applies in two different situations.
benefit proportionality, Article 17 §2 lays down a On the one hand it applies when a person is not in a
more stringent requirement for research without di- state to give consent which means when he or she is
rect benefit to persons incapable of giving consent. factually unable to consent. On the other hand, it ap-
The protocol adds that any consideration of addi- plies when it is impossible, due to the urgency of the
tional potential benefits of the research shall not be situation, for the researcher to obtain, in a sufficiently
used to justify an increased level of risk or burden. timely manner, authorisation from a representative,
The protocol defines what is meant by “minimal authority or body, which would, in the absence of an
risk” and by “minimal burden”. A research bears a emergency situation, be called upon to give authori-
minimal risk if, having regard to the nature and scale sation.
of the intervention, it is to be expected that it will re- Domestic law has to include four specific condi-
sult, at the most, in a very slight and temporary nega- tions.
tive impact on the health of the person concerned. The first specific condition is that research of
Likewise, a research bears a minimal burden if it is to comparable effectiveness cannot be carried out on per-
be expected that the discomfort will be, at the most, sons in non-emergency situations.
temporary and very slight for the person concerned. The second specific condition is that the re-
For certain participants, certain research procedures search project may only be undertaken if it has been
might entail risk or burden which cannot be consid- approved specifically for emergency situations by the
ered minimal. That means that assessment has to be competent body.
carried out on individual basis. Moreover, in assess- The third specific condition is that any relevant
ing the burden for an individual, a person enjoying previously expressed objections of the person known
the special confidence of the person concerned shall to the researcher shall be respected. “Known to the re-
assess the burden where appropriate. This person searcher” means that the potential participant has a
may be a family member, a caregiver, a partner or a card on his person registering such an objection or
close friend. that someone accompanying the person gives infor-
If all these conditions, including specific and addi- mation to the researcher.
tional conditions, are fulfilled, research without direct The fourth specific condition is that, where the
benefit may be undertaken on patients with Alzheimer’s research has not the potential to produce results of di-
disease and other types of dementia, who are no more rect benefit to the health of the person concerned:
capable to give consent.
– it must have the aim of contributing, through
significant improvement in the scientific under-
4.3 Specific situation: research on persons in standing of the individual’s condition, disease or
emergency clinical situations disorder, to the ultimate attainment of results
capable of conferring benefit to the person con-
The protocol addresses research that can only be cerned or to other persons in the same age or af-
undertaken in emergency situations and which is in- flicted with the same disease or disorder or hav-
tended to improve emergency response or care. What ing the same condition
is meant by “emergency clinical situations”? A recog- – it must entail only minimal risk and minimal
nised emergency situation is one that is unforeseen burden.
and which requires prompt action.
The protocol states that it is for the law of the Finally, persons participating in an emergency re-
countries to determine whether, and under which search project or their representative, authority or
protective additional conditions, this research can body shall be provided, as soon as possible, with rel-
69
evant information concerning their participation. The Convention on human rights and biome-
Moreover, consent or authorisation for continued dicine and the Additional Protocol on biomedical re-
participation shall be requested as soon as reason- search provide for a legal framework relevant to the
ably possible. This occurs if the research participant dementia challenge. But their application depends on
recovers full understanding while still undergoing the willingness of the member states. An option might
research. be the signature by the European Union. Moreover,
the rules of the Convention and the Additional Pro-
tocol have to be implemented. The Council of Europe
5 Conclusion conducts a cooperation program with the member
states from oriental and central Europe, called DEBRA
In conclusion, we come back to the title of the chap- project. This project includes multi- and bi-lateral sem-
ter: Are legal systems in Europe fit for the dementia inars and visits and also the production of information
challenge? Our answer is “yes” and “no”. material on the best practices throughout Europe.
70
Chapter 7
TESTAMENTARY AND FINANCIAL COMPETENCE ISSUES IN DEMENTIA
Konstantinos N. Fountoulakis and Katerina Despos
1 Introduction will probably be complicated. Most wills will be chal-

lenged retrospectively, in most of them there will be a
It is well documented and known that old age is radical change from a previous will, an undue influ-
usually accompanied by a decline in neurocognitive ence will be alleged, and dementia may be suspected
function. However, many times the elderly suffer from (Shulman et al., 2005).
dementia of various types. This is of course much dif- Of course the above scenario describes a very
ferent from normal aging and this pathological con- complex and difficult picture. Those professionals
dition robs the patient of his/her memories, intellect, who perform evaluations of competency of demented
and abilities to recognize persons, to maintain basic patients must be specifically trained and experienced
functions, or even comprehensible speech. in performing clinical psychiatric interviews and ad-
Still, all patients have of course the right to par- ministering, scoring, and interpreting psychological
ticipate in decisions, especially about their health, and neuropsychological tests. Training and experi-
treatment and care. Especially the elderly, have the ence in gerontology, neuropsychology, rehabilitation
need and the right to participate in financial and psychology, neuropathology, psychopharmacology,
testimonial decisions. However in order for a person and psychopathology in older adults may also be nec-
to be able to participate in complex decisions like essary in order for the examiner to be able to inter-
them, he/she should be able to consider the benefits, pret the data. Knowledge of the legislation is another
burdens and consequences that will arise. Patients factor of prime importance for the experienced men-
suffering from dementia may and often have the ca- tal health professional.
pacity to make some, but not all, decisions. Thus, it
is necessary to determine where the limits of their
capacities are, having in mind always that it is bet- 2 Dementia and competency
ter to try to discover the patient’s true wishes and pre-
ferences rather than to immediately take to a family Classification systems of disability make a distinction
member for decision making. between the definition of a disease, which concerns
It is possible that challenges to wills on the basis the intrinsic pathology of a disorder, and the defini-
of lack of testamentary capacity are likely to increase tion of disability, which refers to the effect the disease
in the future. This will be the result of a combination has on the patient’s ability to perform everyday func-
of high prevalence of mental disorders in the elderly tions (World Health Organisation, 2001).
and the complexity of modern societies and families. Recent studies suggest that about 20% of pa-
The courts and all experts in the field of geriatric tients with dementia may be competent to complete
medicine, psychiatry and psychology will feel the advance directives in comparison to 78% of the eld-
burden. Professionals from these fields will be asked erly healthy volunteers (Fazel et al., 1999b). Although
to assess the testamentary capacity of individuals the statistics suggest that most demented people
whose wills are being challenged. But most cases are unable to perform such complex tasks, they also
Chapter 7: K.N. Fountoulakis and K. Despos
suggest that about one fifth of them, especially those 3 Definition and prerequisites for testamentary
with an early-stage dementia may be competent to and financial competence
complete even advance directives. Their premorbid
IQ may be an essential prognostic factor of compe- The most important elements many professionals
tency. It is important to note that the mere presence are unaware of, is that capacity is not an all-or-noth-
of any severe mental illness does not automatically ing “on-off ” switch. It depends both on the specific
render elderly people incompetent (Regan and Gor- issue, the circumstances and the assistance that can
don, 1997). What might be of particular importance be given to the patient by his/her family and profes-
is the determination of the dementia subtype, as the sionals. In this frame, a patient may be able to make
neuropathology and the brain areas affected by each some but not all decisions. Of course, the more seri-
subtype differ and subsequently differ the pattern of ous the risks or the consequences of a decision, the
disordered functions. This is an important concep- clearer the patient’s capacity needs to be. This deci-
tual framework to have in mind when considering sion-making capacity presumes several functions of
decision-making capacity in individual cases. Even the patient are relatively intact. These include reality
more, the mental health professional must have in testing, neurocognitive function and personal values
mind that competence is specific, not global, that is, and goals. One of the most difficult issues a profes-
an individual is or is not competent with respect to a sional may face is the fact that a patient’s “bad” de-
specific decision or setting (Fazel et al., 1999a). Also, cision from the perspective of the healthcare profes-
impaired awareness of deficits does not necessar- sionals or family caregivers is not necessarily a prime
ily occur for all areas of functioning simultaneously. indicator of lack of capacity or incompetence, and the
Alzheimer’s disease patients may have varying levels genuine free will of the patient should be respected.
of awareness for deficits in several domains of func- No one should “protect” the patient from “false” deci-
tioning such as attention, recent and remote mem- sions, in case he/she is competent in making them.
ory, everyday functioning and self-care (Starkstein While some areas to be assessed are easily exam-
et al., 1996). It is reported they may be more aware ined (e.g., neurocognitive function), other areas like
of their self-care and social and emotional deficits the retention of values or judgment and reasoning
than of their cognitive deficits. Awareness of deficits are problematic. One area that has not been studied
is more problematic when the deficit involves areas extensively is awareness of financial skills. The ability
that require more complex and higher order process- to assess awareness in this domain would be of par-
ing and integration as is the case with testamentary ticular value because there are many and significant
and financial decisions (Vasterling et al., 1997). risks involved in making poor financial decisions and
Unfortunately, the widespread belief even among there is a great demand by family members and car-
doctors is that demented patients are by definition egivers, legal representatives for financial incapacity
incapable of complex decisions. A US survey showed assessments (Silberfeld, 1995).
that 72% of them believed that a diagnosis of de- Various measures (Goel et al., 1997; Loewenstein
mentia automatically renders a person incompetent et al., 1989) are available that assess the ability to
(Markson et al., 1994). These beliefs have profound identify and count currency, complete cash transac-
consequences, one of which is the fact that most tions, write cheques, balance a cheque-book, and un-
records do not include sufficient and valid data to derstand a bank statement. However, these measures
retrospectively assess competence (Toffoli and Herr- only assess the ability to complete financial tasks and
mann, 1993). do not examine the subject’s understanding of the
situation and the risks, benefits and alternatives as-
sociated with the decision (Cramer et al., 2004).
72
Testamentary and financial competence issues in dementia
4 Methods to test testamentary and financial ly member or friend (Fleming et al., 1996). Of course
competence in dementia the underlying assumption is that individuals lacking
awareness of deficits have unreliable and distorted
Unfortunately there is no gold standard by which to self-perceptions and the accounts of the objective
determine competence to make a complex decision. raters are accurate. The problem, however, is that
Of course the use of a neurocognitive screen, such as one should also take into account the interest these
the CAMDEX-R is highly recommended but is gener- people have in the patient’s estate.
ally not predictive of decisional capacity. Especially
when depression is present, patients may appear
even more disable, but this is not by definition irre- 5 Conclusion
versible. On the contrary the presence of delusions
or hallucinations may render the patient completely Although during the recent few decades mental
incapable of decision making, although sometimes health professionals and the public increasingly
this depends on the content and the context of the face more problems concerning the competency of
appearance of psychotic symptoms. the elderly with greater frequency, especially when
The assessment of competence in the elderly is they suffer from dementia, much research remains
an assessment of general and specific functional abil- to be done in this field. Also it seems that both pro-
ity and not merely the establishing of a diagnosis. fessionals and families of patients are insufficiently
Sometimes, the circumstances and clinical features informed about competency issues. It has been re-
of the case will make intensive and extensive study ported that the children of demented patients are
necessary to form a well-considered opinion. poorly informed as to the legal status of their par-
An opinion with respect to competence must re- ents’ financial position in spite of the fact that all feel
flect consideration of functioning in the present and they need assistance. Most of them would welcome
in the recent past, as well as, the future implications the help of professionals (al-Adwani and Nabi, 1998).
implicit in the diagnosis. The clinical state of compe- Unfortunately the same picture is reported for health
tence is of course subject to change (MacKay, 1989). professionals, many of which remain unaware of the
A list of areas that should be tested and evaluated in provisions of the legislation and are unclear about
order for the expert to arrive at a conclusion is shown what information will be required (Bennett and Hal-
in Table 1. The list includes all important suggestions len, 2005). All health professionals should know that
found in the literature (Arie, 1996; Bassett, 1999; Ben- when a person is in hospital, nursing center or simi-
nett and Hallen, 2005; Cramer et al., 2004; Fazel et al., lar facility, especially when this happens because of
1999a; Heinik et al., 1999; Lieff et al., 1984; Regan and a mental disorder, should never sign any document
Gordon, 1997; Sahadevan et al., 2003). without the knowledge and permission of the doctor
An important complementary approach to as- in charge. This should be an absolute rule but still it
sess the patient’s awareness of deficits is to compare is not included in most ward information booklets
patient’s self-reporting to the reports of a close fami- given to patients and relatives.
73
Chapter 7: K.N. Fountoulakis and K. Despos
Table 1. List of areas to be examined and basic guidelines when assessing the financial and testamentary competency of a de-
mented patient (Arie, 1996; Bassett, 1999; Bennett and Hallen, 2005; Cramer et al., 2004; Fazel et al., 1999a; Heinik et al., 1999;
Lieff et al., 1984; Regan and Gordon, 1997; Sahadevan et al., 2003)
Basic psychiatric interview

Delusions (especially when directly influence decisions)
Hallucinations (especially when giving commands)
Basic neurocognitive evaluation (with the use of tests)
Orientation
Memory (especially the patient must remember family members and other significant persons,
must be able to keep track of financial transactions and decisions)
Language (expression/comprehension of speech and written language)
General knowledge (especially concerning financial issues, depending on status)
Calculating ability
Judgment and reasoning (especially changes from premorbid ability)
Evaluation of the context
Retention of personal values and goals
Consistency of decisions, stable choices
Understand the nature of the act being undertaken
The extent of the property involved
The legal heirs and all who might reasonably have a claim
The choices available
What are the specific consequences of the decision (e.g., how the property is distributed)
Assessment of premorbid functioning
Family, friends and business associates should be asked about the patient’s past and present level of function
(the clinician should have in mind potential conflicts of interest)
Process guidelines
All relevant information should be presented in short and simple sentences.
After each “input” of information, the patient is asked to tell the meaning.
Assist the patient in considering what he/she thinks will be the consequences of his/her decisions.
The assessment process may take much time and usually can not be rushed.
The demented patient’s authentic wishes should be respected and not over-ruled in the interests
of what family or staff feel is best for him/her
Neuropsychological/Psychometric testing
CAMDEX-R (for global cognitive evaluation)
Trail Making Test (for general mental functioning)
Measure for assessing Awareness of Financial Skills (MAFS)
The Testament Definition Scale (TDS)
74
Testamentary and financial competence issues in dementia
References Lieff S, Maindonald K, Shulman K (1984) Issues in determining

financial competence in the elderly. Can Med Assoc J 130:
al-Adwani A, Nabi W (1998) Financial management in patients 1293–96
with dementia; their adult children’s knowledge and views. Loewenstein DA, Amigo E, Duara R et al. (1989) A new scale
Int J Geriatr Psychiatry 13: 462–65 for the assessment of functional status in Alzheimer’s dis-
Arie T (1996) Some legal aspects of mental capacity. BMJ 313: ease and related disorders. J Gerontol 44: 114–21
156–58 MacKay MJ (1989) Financial and personal competence in the
Bassett SS (1999) Attention: neuropsychological predictor of elderly. The position of the Canadian Psychiatric Associa-
competency in Alzheimer’s disease. J Geriatr Psychiatry tion. Can J Psychiatry 34: 829–36
Neurol 12: 200–05 Markson LJ, Kern DC, Annas GJ et al. (1994) Physician assess-
Bennett H, Hallen P (2005) Guardianship and financial man- ment of patient competence. J Am Geriatr Soc 42: 1074–80
agement legislation: what doctors in aged care need to Regan WM, Gordon SM (1997) Assessing testamentary capac-
know. Intern Med J 35: 482–87 ity in elderly people. South Med J 90: 13–15
Cramer K, Tuokko HA, Mateer CA et al. (2004) Measuring Sahadevan S, Chin JJ, Yap MN et al. (2003) Assessing decision-
awareness of financial skills: reliability and validity of a new making capacity in dementia patients: a semi-structured
measure. Aging Ment Health 8: 161–71 approach. Ann Acad Med Singapore 32: 749–55
Fazel S, Hope T, Jacoby R (1999a) Assessment of competence Shulman KI, Cohen CA, Hull I (2005) Psychiatric issues in ret-
to complete advance directives: validation of a patient cen- rospective challenges of testamentary capacity. Int J Geri-
tred approach. BMJ 318: 493–97 atr Psychiatry 20: 63–69
Fazel S, Hope T, Jacoby R (1999b) Dementia, intelligence, and Silberfeld M (1995) Sacrificing patient autonomy? Health Law
the competence to complete advance directives. Lancet Can 16: 14–16
354: 48 Starkstein SE, Sabe L, Chemerinski E et al. (1996) Two domains
Fleming JM, Strong J, Ashton R (1996) Self-awareness of deficits of anosognosia in Alzheimer’s disease. J Neurol Neurosurg
in adults with traumatic brain injury: how best to measure? Psychiatry 61: 485–90
Brain Inj 10: 1–15 Toffoli ND, Herrmann N (1993) Determination of financial
Goel V, Grafman J, Tajik J et al. (1997) A study of the perform- competence in consultation-liaison psychiatry. Can J Psy-
ance of patients with frontal lobe lesions in a financial chiatry 38: 595–98
planning task. Brain 120 (Pt 10): 1805–22 Vasterling JJ, Seltzer B, Watrous WE (1997) Longitudinal as-
Heinik J, Werner P, Lin R (1999) How do cognitively impaired sessment of deficit unawareness in Alzheimer’s disease.
elderly patients define “testament”: reliability and validity Neuropsychiatry Neuropsychol Behav Neurol 10: 197–02
of the testament definition scale. Isr J Psychiatry Relat Sci World Health Organisation (2001) International classification
36: 23–28 of functioning, disability, and health. Geneva: World Health
Organisation
75
Chapter 8
ASSESSMENT OF COMPETENCY AND ADVANCE DIRECTIVES
Julian C. Hughes
1 Introduction This decision process, however, immediately raises

complications. For, if the aim is to control the future,
A discussion dealing with competency assessment it is to be controlled by the present. Another way of
and advance directives might best begin by adress- putting the aim, therefore, is to say that the advance
ing the concept of competence. The assessment of directive is all about how my present wishes should
competence would then lead us to consider the defi- be enacted in the future. However, this line of reason-
nition and the criteria that have to be met in order ing would imply that the aim has at least as much to
to say someone is competent. In this case we are do with the present as it does with the future.
considering the idea of competence to complete an This might not pose any sort of difficulty: my
advance directive; so having stipulated the criteria, clear present wishes might turn out to be fully ap-
we should then consider what would constitute an plicable to the circumstances that arise in the future
appropriate test of this competence in accordance and so my advance directive is enacted. However,
with these criteria. However, we should start, not even trying to put things in as practical and straight-
just by thinking about advance directives, but also by forward a manner as this does not satisfy what we
thinking about their ultimate objectives: what is the were hoping to achieve. I need to add that my clear
end or aim of an advance directive? Afterwards, we present wish is fully applicable to the future circum-
shall hopefully have gained a perspective that ena- stances and that the present wish remains my clear
bles us to say more about competence with respect wish in the future. There is nothing wrong with this,
to advance directives. I shall argue that we need the of course, as it may well represent the truth. It does,
broadest possible view, which will amount to a per- however, impose an obligation on clinicians, to make
spective of the person. In which case, the assessment sure that the previous wish would still be the present
of competence will seem less like a test of the legal wish. For this reason the Mental Capacity Act 2005,
notion of decision-making capacity and more like an which governs the law in England and Wales from
evaluative interpretation involving the person’s nor- 2007, states that an advance decision is invalid if the
mative narrative. person has done anything that is inconsistent with
the previous refusal of treatment. For similar reasons
the Act states that the specific circumstances of the
2 The end of an advance decision advance refusal must obtain and that, if there have
been any changes in circumstance not anticipated
The aim or point of an advance decision might seem when the advance refusal was made that would have
quite straightforward. If I am concerned now that I affected the person’s decision, then the advance re-
should not be kept alive if, in the future, I were to have fusal is not applicable. A complicating issue, there-
a massive stroke, I can stipulate this in an advance fore, is the finding that people’s preferences for life-
directive, or (more formally) an advance refusal of sustaining treatment increase as cognitive function
treatment. The aim, therefore, concerns the future. worsens (Fazel et al., 2000). All of this, therefore, has
Chapter 8: J.C. Hughes
to be considered very carefully: in practice the par- end of a story. And the authenticity of the ending will
ticular details of individual cases will be vital. depend in large measure on the accuracy and detail
There is still, however, a conceptual problem. In of the story.
a preliminary manner, I previously concluded that
the aim of advance decisions has at least as much to
do with present wishes as with future actions. But I 3 The underpinning person
went on to stress how essential it was that the present
wish should remain the clear future wish. Therefore, My contention is that we must understand the per-
the main point seems to be the connection between son’s story as fully as possible in order to understand
the present and the future wish. However, the essen- whether the ending is, in some sense of the word, au-
tial point is the future wish – and the present wish thentic. (But the exact sense of “authentic” with re-
only inasmuch as it sheds light on the future wish. spect to advance directives is difficult to pin down: it
This function of shedding light is nonetheless crucial certainly does not equate to “reasonable” or “ration-
given that, when the decision has to be made, what is al”, see Vollmann, 2001.) A purely ethical question is:
deemed to be best might be surrounded by darkness. is the decision to withhold treatment right (is it the
The advance directive then comes into its own as a moral thing to do)? It is interesting to note how un-
guide. derstanding the person’s story interrelates with this
To return to the idea of the connection between question. If we can understand the person’s story
the present and the future wish, the conceptual point right, so that the ending is as authentic (as in keep-
(but one with considerable practical relevance) con- ing with the person’s life) as possible, we are likely to
cerns how this connection is maintained. The situa- make the morally correct decision. Once again there
tion will be this: the doctors and nurses stand around is a caveat to be added, to which I shall return.
my bedside after my major stroke debating how far For now, however, there are two points. First,
to go in their attempts to keep me alive. They cannot there is a connection to be made between the narra-
know my present wishes. (For the sake of the argu- tive and the decision at the end of the person’s life.
ment this has to be presumed, but it’s a weighty pre- There is a sense in which the narrative carries nor-
sumption.) They know my past wishes, but to what mative weight. In other words, it is not simply that
extent do my past wishes affect what my present there is a story that has an ending; rather, only some
wishes would be if I were able to communicate them? endings will be right, true, or authentic. The story
What is the connection between the past wishes and leads us in some direction or other and the ending
what would be my present wishes? cannot be simply gratuitous, not if it is to be the right
The rather jejune point to make is that the con- ending (although there is no reason to presuppose a
nection can hardly be regarded as the piece of paper single possible right ending). There is some element
on which the advance directive is written, even if in of normative constraint embedded in the narrative
extreme cases it might be all that the clinicians have concerning how things might go.
to go on. But this alone is also not the whole story. This leads to the second point, which is that
Perhaps the advance directive has been renewed correctly understanding the person’s story, so that
every year for the last twenty years and the views it we make the right moral decisions, entails that we
expresses have been discussed fairly frequently with understand the person. Even if not determinative
my family and close friends. In short, the connection of the decision at the end of the person’s life, almost
between the past wishes and the present wishes is any detail might be relevant so that clinicians making
more substantially maintained by the fullest possible these sorts of decision need to be as open as possi-
account of the person’s story or narrative. Accord- ble to every facet of the person’s makeup. This is part
ingly, the end of an advance decision becomes the of what it means to act in the person’s best interests.
78
Assessment of competency and advance directives
Underlying the aim of advance directives is a require- that one must explicitly pay attention to the bod-
ment that we take the unique individual person se- ily way in which persons with dementia ‘are in
riously, that we recognize the multifarious ways in the world’” (Dekkers, 2004).
which he or she might be situated.
Hence, we need to see human persons as situ- Thus, to understand whether the ending is authentic,
ated in a personal history; but also as embedded in we need to be attuned to the normative nature of the
social, cultural, historical, legal, moral and spiritual person’s narrative and this will involve some form of
fields. The number of different ways in which people engagement with the individual’s nature as an em-
are embedded is a reflection of the uncircumscrib- bodied agent situated in multifarious and potentially
able nature of personhood (Wiggins, 1987). This is uncumscribable fields. The more such an engage-
a notion that cannot be finally pinned down, but re- ment has been realized, the more likely it is that deci-
quires a broad view (Hughes et al., 2006a). The fuller sions at the end of the person’s life will be made in a
description of us as persons – a description that ac- morally appropriate manner.
cording to the account being proposed remains valid Where, however, does this leave the advance di-
even in severe dementia – includes our embodied rective? Inasmuch as the advance directive reflects
agency (Aquilina and Hughes, 2006). The notion of the normative nature of the individual’s narrative,
agency links to autonomy and it might be thought to that extent it will be useful. But this entails that a
that this is the central notion in connection with judgement needs to be made about the standing of
advance directives. They are, after all, a way to exer- the advance directive against the much richer back-
cise autonomous choice ahead of a time when it is ground of the person’s whole life. In the UK, a Gov-
otherwise no longer possible. However, it is situated ernment discussion paper (Who Decides?) some years
embodied agency (Hughes, 2001), which stresses the ago put it this way:
extent to which our agency is circumscribed by the
realities that surround us as individuals. “The advance statement is not … to be seen in
This is the caveat to which I had promised to isolation, but against a background of doctor/
return. It might have sounded as if all we had to do patient dialogue and the involvement of other
to make the morally correct decision was to under- carers who may be able to give an insight as to
stand the person’s story. But necessarily the person’s what the patient would want in the particular
story is also located in a multitude of fields. The per- circumstances of the case” (Lord Chancellor’s
son might yet be evil or ill, so that we can neither say Department, 1997).
that just any story has to be accepted, nor any ending.
Meanwhile, the notion of being embodied must not This view seems to be in keeping with the views of
be understood in too facile a fashion. In severe de- some of those who advocate the importance of a nar-
mentia it increasingly becomes the only way in which rative understanding.
the person’s subjectivity can be expressed (Matthews,
2006). It may indeed be that we have to interpret bod- “From a narrative perspective, a person’s identity
ily movements as being meaningful within a particu- is formed in stories, which both express and cre-
lar context. ate the unity of a person’s life. As stories, advance
directives presuppose the unity of the patient’s
“Even in advanced dementia, when rational, life, and try to contribute to that unity, not by
verbal, and emotional communication is largely making the different phases identical, but by
absent, there are still communicative methods of trying to create a meaningful whole which cov-
importance left. The only way to communicate ers all of them” (Widdershoven and Berghmans,
with these patients is via their body. This means 2001a).
79
This view does not make life easier for the decision- (especially as regards what it might be for the person
maker; it increases the burden in that it highlights to weigh things up), the matter looks straightforward.
the need for these practical judgements to be made If I can recall and understand that what I am now do-
with the greatest of care, involving interpretation of ing is stating that if, in the context of severe demen-
a whole raft of potential factors. But the unpacking tia, I were to stop eating I would not wish to be fed by
of personhood provides us with the connection we any artificial means, and if I am able to demonstrate
were looking for between the past and the present, that I can communicate and weigh up the pros and
because the agent (whose autonomous decisions we cons of this decision, then I have the capacity to make
should like to respect) is embodied and situated. The the advance directive to this effect. On the face of it
person’s bodily history and location in a story, which this does not seem to raise enormous problems for
helps to constitute his or her self, is the connection assessing competence.
between the past and the present. The person’s situat- However, in the Mental Capacity Act 2005 (and I
edness is such that the present cannot be interpreted am presuming that legislation in other jurisdictions
in ignorance of the past and the past cannot ignore would raise similar issues) the details concerning ad-
the realities of the present. vance decisions make a difference in terms of what
Our excursion into the underpinning nature of the person making the advance refusal of treatment
personhood, therefore, leads us to see the advance di- needs to understand. The main point is that the ad-
rective in context. The broader view makes plain the vance directive must be specific and it can only come
continuing ethical imperative that decisions at the into effect under the very specific circumstances en-
end of a person’s life, even with an advance directive, visaged. So what if, even in the context of severe de-
ought still to be regarded as problematic rather than mentia, I were to stop eating for what seemed likely
in any sense run of the mill. Precisely because of the to be a transient period? Perhaps an intercurrent ill-
complexities around the notion of personhood in de- ness means that I am in too poor a condition to eat
mentia (Hughes et al., 2006b), these decisions cannot and without artificial feeding I might die, but I am
be taken in a light minded fashion. more likely just to be ill for longer. Was this the sort
of situation I had in mind when I completed the ad-
vance directive? If not, can it still be said that I was
4 Judging advance directives competent to make the advance directive that I did?
If it was what I had in mind, but I did not stipulate
Having considered the aim of advance directives it, does that in itself show a lack of capacity (or was
within the broader context of personhood, let us re- I presuming that people I trust might make the finer
turn to the notion of competence. What should be the decisions for me)?
criteria by which a judgement about my competence It might be tempting to try to come up with an
to complete an advance directive should be made? example where there could be less room for equivo-
In England and Wales, from April 2007, the simple cation, cardiopulmonary resuscitation (CPR) for in-
answer is supplied by the Mental Capacity Act 2005. stance. Say I stipulate that I would never wish to re-
Setting aside the important principles that capacity ceive CPR under any circumstances, how should this
must be presumed and so on, the criteria that have be interpreted? If I have made this advance directive
to be fulfilled to state that a person has the capacity today, whilst fit and well, and then I am involved in an
to make a decision are that he or she can recall, un- accident tomorrow, this is not a circumstance that I
derstand and weigh up the material information and might have foreseen and there may well be reasons,
communicate the decision. If we ignore ( for now) therefore, for doubting that I want the advance refus-
the point that these rather objective factual-looking al to be honoured. Of course, there may be obvious
criteria yet conceal subjective evaluative judgements reasons for believing that this is precisely the sort of
80
circumstance that I had in mind; but this is to say that requires the broad narrative view of personhood
we need a bigger picture: what did I mean or intend and judging a person’s competence to complete an
when I wrote the advance directive? If I were to write advance directive should entail an evaluative inter-
such a broad advance refusal, could it be said that I pretation concerning the authenticity of the decisions
had capacity to do so if there was no evidence that being made. The question is not solely a factual one
I had considered such possibilities? Even if I were to about cognitive performance, therefore, but is also
stipulate that in the context of moderate to severe one in which value judgements must play a role.
dementia I did not wish to have CPR, would I need In short, for good conceptual reasons, our attempt
to show that I knew what moderate to severe demen- to ignore values in the assessment of capacity has
tia might be? Otherwise, how could I be proclaimed failed – and rightly so!
competent to make this decision? Say that I did stipu-
late what I meant by moderate to severe dementia,
but that when it came to it I did not seem to be in the 5 Judging competence
state that I had envisaged I would be in when I said
that I was against CPR, it is clear that on this ground Now all of this is not without consequence. For in-
the advance directive could be declared invalid. But stance, doctors have concerns about implementing
does this also show that I was incompetent to make advance directives and one potential remedy might
this specific advance decision? be if there were more certainty about the compe-
I should say, to be clear, that my inclination in tence with which advance directives are completed
response to the questions I have posed is to equivo- (Srebnik et al., 2004).
cate. In other words, under some circumstances it In a review of instruments to assess decision-
might seem right to honour the advance directive making capacity, Vellinga et al. (2004a) identified two
and in other circumstances right to ignore it. Simi- papers that assessed competence to complete an ad-
larly, whether or not it would be appropriate to say vance directive. The first, by Barton et al. (1996) made
that I was incompetent to complete the advance use of the Hopkins Competency Assessment Test
directive would require careful judgement. What (HCAT). The second study involved a semi-structured
would be required would be the broader perspec- interview using case vignettes (Fazel et al., 1999). Fa-
tive. This is where being attuned to the normative zel et al. (1999) pointed out that an earlier study (Sil-
nature of the person’s narrative, engaging with the berfeld et al., 1993) had suggested criteria to test the
person as a situated individual, comes into play. capacity to complete an advance directive, focusing
Seeing the advance directive as thus embedded em- on whether the person could understand its nature
phasizes the need for interpretation. It also suggests and purpose. But, as Fazel et al. (1999) comment, this
that judging the requisite competence to complete “does not assess whether an individual is capable of
an advance directive must be a matter of judging understanding actual possible future clinical situa-
that the person making the advance directive is act- tions”; nor does the HCAT, also used by Janofsky et al.
ing authentically. The conceptual links between au- (1992). As Fazel et al. (1999) state, understanding ac-
thenticity and a person’s identity are complex (Rad- tual possible future clinical situations “is critical to
den, 1996). Nevertheless, there is a clear sense in competently completing an advance directive”. Vel-
which for a story to be authentic the ending should linga et al. (2004a) agree: “Because advance directives
ring true (like an “authentic cadence” in music). The consider hypothetical future situations by definition,
normative nature of the person’s narrative ensures the hypothetical character of vignettes is very similar
that certain endings will not be true and the point in concept”.
of an advance directive is to guard against such dis- A more recent study has used a semi-structured
sonance. Judging an advance directive, therefore, tool, the Competence Assessment Tool for Psychi-
81
atric Advance Directives (CAT-PAD), to assess com- where there was better agreement between the as-
petence to complete an advance directive (Srebnik sessment of competence as judged by a vignette ap-
et al., 2004). The study suggests that the instrument proach and as judged by the family compared to the
has reasonable psychometric properties and that judgements of physicians. But the physicians were
most of a population of people with severe mental more lenient, tending to regard people as compe-
health problems (with a mean age of 41.9 ± 9.3 years) tent. The interesting point is that there is no objec-
were competent to complete an advance directive. tive way to judge between these groups. Hence, the
Recognizing that there is no consensus on the degree judgement about competence needs itself to be seen
of capacity required to write an advance directive, the as a situated judgement, in which the importance
authors of this study were against the use of rigid cut- of values is recognized. The task then becomes one
off scores. They recommended instead that the indi- of carefully negotiating between differing values,
vidual abilities tested should be considered, because which is the essence of values-based practice (Ful-
failure in one component (understanding, reasoning, ford, 2004). Moreover, this sort of negotiation, which
appreciation or evidencing a choice) might render must start with an attempt to understand the other’s
the person incompetent. meaning, is relevant even at the stage of assessing
In response to this paper, several points need to competency to complete the advance directive in
be made. First, exactly how realistic the choice pre- the first place.
sented to the participants was is in question. It was Furthermore, whilst attempting to assess an in-
about whether or not someone should be hospital- dividual’s understanding of “actual possible future
ized; but whether this was a realistic choice for the clinical situations” (Fazel et al., 1999), it has to be re-
participants is not clear. This is important because of called that what is really at issue is that the person’s
evidence that whether the situation to be discussed present wish should remain his or her settled wish in
is realistic or not might have an effect on decision- the future and, therefore, that the requisite compe-
making capacities (Vellinga et al., 2005). Secondly, tence to complete an advance directive is a matter of
we have already noted that people’s views change, for judging that the person making the advance direc-
instance in the context of worsening cognitive func- tive is acting authentically. This then starts to count
tion (Fazel et al., 2000). Although it makes sense to against the more legalistic conceptions of an advance
complete an advance directive early, the worry about directive and instead stresses the communicative na-
competence will often arise later when cognitive ture of the decisions, which might mean that some
impairment is more of a reality and the relevance of advance directives should not even be considered
Srebnik et al. (2004) to this population is question- (van Delden, 2004).
able. Finally, as the authors themselves recognize, the
CAT-PAD focuses on cognitive function related to de-
cision-making, whereas volitional factors need to be 6 Conclusion
considered too.
But these studies raise other difficulties. For Judging competence to complete an advance direc-
instance, there is good evidence that different phy- tive is a matter of judging that the person making the
sicians, and physicians compared to family mem- advance directive is acting authentically. I reached
bers, and both of these groups in comparison with this conclusion by considering the end that advance
a vignette, can reach statistically different opinions directives aim at: some form of authentic cadence,
about competence (Vellinga et al., 2004b). It may requiring that those involved are attuned to the per-
well be that context is very important: this was cer- son’s life. The view required is a broad one, because
tainly the conclusion I reached above on conceptual persons must be understood as embedded in a vari-
grounds, but it is also seen in Vellinga et al. (2004b) ety of fields. Tests to assess competence to complete
82
an advance directive have to be judged against this for life-sustaining medical therapy. Am J Psychiatry 157:
broad canvas of individual authenticity. 1009–11
The worry that “authenticity” is itself too hard Fulford KWM (Bill) (2004) Facts/values. Ten principles of val-
ues-based medicine. In: (Radden J, ed) The philosophy of
to pin down and might collapse into some form
psychiatry: a companion. Oxford University Press, Oxford,
of paternalistic best interests (Holm, 2001) errs in pp 205–34
that it takes “authentic” simply to mean to fit into Holm S (2001) Autonomy, authenticity, or best interest: eve-
or continue a pattern. For there will be a variety ryday decision-making and persons with dementia. Med
of ways in which the ending might ring true. Some Health Care Philos 4: 153–59
of these, at least at first blush, will be unexpected. Hughes JC (2001) Views of the person with dementia. J Med
What is required is that the advance directive is re- Ethics 27: 86–91
Hughes JC, Louw SJ, Sabat SR (2006a) Seeing whole. In:
garded, not as a simple rule or legal dictate, but as
(Hughes JC, Louw SJ, and Sabat SR, eds) Dementia: mind,
a way of fostering understanding of “the interpre- meaning, and the person. Oxford University Press, Oxford,
tative and intersubjective aspects of decision-mak- pp 1–39
ing … [A]s communicative tools, they may … give Hughes JC, Louw SJ, Sabat SR (eds) (2006b) Dementia: mind,
structure to shared ways of dealing with important meaning, and the person. Oxford, Oxford University Press
aspects of human life” (Widdershoven and Bergh- Janofsky JS, McCarthy RJ, Folstein MF (1992) The Hopkins
mans, 2001b). competency assessment test: a brief method for evaluating
patients’ capacity to give informed consent. Hosp Comm
Just as judging an advance directive requires a
Psych 43: 132–36
broad narrative view of personhood, judging a per-
Lord Chancellor’s Department (1997) Who decides? Mak-
son’s competence to complete an advance directive ing decisions on behalf of mentally incapacitated adults.
must entail an evaluative interpretation concerning HMSO, London
the authenticity of the decisions being made. And the Matthews E (2006) Dementia and the identity of the person.
basis of this interpretation can only lie in the inter- In: (Hughes JC, Louw SJ, and Sabat SR, eds) Dementia:
connectivity of our narratives and our shared nature mind, meaning, and the person. Oxford University Press,
Oxford, pp 163–77
as human beings in the world.
Radden J (1996) Divided minds and successive selves: ethical
issues in disorders of identity and personality. The MIT
Press, Cambridge, MA
References Silberfeld M, Nash C, Singer PA (1993) Capacity to complete an
advance directive. J Am Geriatr Soc 41: 1141–43
Aquilina C, Hughes JC (2006) The return of the living dead: Srebnik D, Appelbaum PS, Russo J (2004) Assessing compe-
agency lost and found? In: (Hughes JC, Louw SJ, and Sabat tence to complete psychiatric advance directives with the
SR, eds) Dementia: mind, meaning, and the person. Oxford competence assessment tool for psychiatric advance direc-
University Press, Oxford, pp 143–61 tives. Compr Psychiatry 45: 239–45
Barton CD, Mallik HS, Orr WB, Janofsky JS (1996) Clinicians’ van Delden JJM (2004) The unfeasibility of requests for eutha-
judgment of capacity of nursing home patients to give in- nasia in advance directives. J Med Ethics 30: 447–52
formed consent. Psychiatr Serv 47: 956–60 Vellinga A, Smit JH, van Leeuwen E, van Tilburg W, Jonker C
Dekkers WJM (2004) Autonomy and the lived body in cases of (2004a) Instruments to assess decision-making capacity:
severe dementia. In: (Purtilo RB, ten Have HAMJ, eds) Ethi- an overview. Int Psychogeriatr 16: 397–19
cal foundations of palliative care for Alzheimer’s disease. Vellinga A, Smit JH, van Leeuwen E, van Tilburg W, Jonker C
Johns Hopkins University Press, Baltimore and London, pp (2004b) Competence to consent to treatment of geriatric
115–30 patients: judgements of physicians, family members and
Fazel S, Hope T, Jacoby R (1999) Assessment of competence the vignette method. Int J Geriatr Psychiatry 19: 645–54
to complete advance directives: validation of a patient cen- Vellinga A, Smit JH, van Leeuwen E, van Tilburg W, Jonker C
tred approach. Br Med J 318: 493–97 (2005) Decision-making capacity of elderly patients as-
Fazel S, Hope T, Jacoby R (2000) Effects of cognitive impair- sessed through the vignette method: imagination or real-
ment and premorbid intelligence on treatment preferences ity? Aging Ment Health 9: 40–48
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Vollmann J (2001) Advance directives in patients with Alzhe- Widdershoven GAM, Berghmans RLP (2001b) Advance direc-
imer’s disease: ethical and clinical considerations. Med tives in dementia care: from instructions to instruments.
Health Care Philos 4: 161–67 Patient Education and Counselling 44: 179–86
Widdershoven G, Berghmans R (2001a) Advance directives Wiggins D (1987) The person as object of science, as subject
in psychiatric care: a narrative approach. J Med Ethics 27: of experience, and as locus of value. In: (Peacocke A and
92–97 Gillett G, eds) Persons and personality: a contemporary in-
quiry. Blackwell, Oxford, pp 56–74
84
Chapter 9
INFORMED CONSENT IN DEMENTIA RESEARCH
Anco vd Vorm and Marcel GM Olde Rikkert
The process of informed consent is a topic of ethical and Grisso, 2001). This also requires an assessment
debate because there may be a conflict of interests of mental status, hearing, speech and vision before-
between researchers and eligible subjects. Interna- hand.
tional rules, such as the Declaration of Helsinki (last
revision, 1989), the Nuremberg Code (1947) and the
International Covenant on Civil and Political Rights 1 Introduction
of the United Nations (1966), require free and in-
formed consent of research subjects. Recently, much The approval of a study by the responsible ethics
has been written about informed consent procedures committee should guarantee, amongst others, quali-
for medical research, but empirical data on how this ty control of this complex consent procedure. How-
complicated process might be optimized in research ever, ethical review boards rarely specifically address
on elderly subjects are scarce. the procedure used for assessment of capacity to
International legislation requires that human consent. In papers written on research in the elderly,
subjects must give truly informed and free consent the issue of capacity to consent procedures is de-
before participating in medical research. Despite tailed specifically in only very few of the studies (Olde
great similarities between national laws and inter- Rikkert et al., 1996). In our survey of the literature, the
nationally accepted ethical codes, research practice frequency in which information on informed consent
is still highly heterogeneous, especially in dementia by the responsible ethics committee were published
research, which has to deal with the complex issue was unexpectedly low, though the general public, edi-
of decline of capacity to consent (Olde Rikkert et al., tors of scientific journals, granting research counsels,
2005). To reach a more uniform approach, more atten- and patient organisations emphasize the importance
tion to the informed consent procedure is required in of this subject.
demented subjects, even more so because they often An important new law in this field is the last
also suffer from problems in hearing, speech, and vi- and recently amended version of the Guidelines for
sion. Assessment of the capacity to consent often is Good Clinical Practice (GCP). These guidelines are
the first step in research in subjects with known cog- now formally accepted as the new EU Directive (Di-
nitive decline. Subjects judged as incapable to con- rective 2001/20/EC), after having been approved of
sent must be excluded or consent by a third party by the European Committee in December 2000. From
(proxy) must be obtained, if this is possible accord- May 2004 this guideline was implemented in all EU
ing to applicable legislation. However, up till now countries. The new GCP guideline increases the re-
there are no well- accepted standards for uniformly strictions for research on subjects who are incom-
determining capacity to consent (Hearnshaw, 2004). petent to consent. However, this new GCP-directive
Next, the information given should be matched to the introduces multiple terms that may be interpreted
reading ability and comprehension of the elderly sub- and implemented in many different ways (e.g., re-
jects studied and the proxies involved (Appelbaum search “directly related to a debilitating condition”,
Chapter 9: A. vd Vorm and G.M. Olde Rikkert
“life threatening condition” and “grounds for expect- had poor information recall of the imported issues
ing benefit”). This may even increase the heteroge- related to the research (Lavelle et al., 1993). However,
neity both in the ethics committee’s conclusions on specific studies on the issues of informed consent in
research in dementia and in the professional’s judge- dementia research are scarce. The firmest conclusion
ments on capacity to consent, instead of diminishing from such empirical studies is that the diagnosis of
the differences in interpretation. dementia does not tell very much about capacity to
However, the growing attention to informed consent. Capacity to consent depends both on the
consent by regulatory bodies, requires researchers cognitive capacity of the subject and the complexity
to invest much time, energy and creativity in inform- of the study. In a longitudinal study of healthy aging
ing elderly subjects appropriately to allow for free and dementia, with both demented (n = 250) and
and autonomous decisions. Ultimately, informed nondemented (n = 165) participants, all non-dement-
consent has to be obtained from a sufficient number ed and very mildly demented participants and 92%
of subjects to meet sample size requirements. In of mildly demented participants provided a sufficient
this chapter we will give an overview on how this number of correct answers for the test of capacity to
important goal can be reached efficiently in demen- consent (Buckles et al., 2003). Demented individuals,
tia research, to enable good quality research with in very mild and mild stages of dementia, understood
high clinical relevance for dementia care, while at informed consent information for this non-therapeu-
the same time safeguarding the interests, legal and tic study. In general, understanding notably declined
moral rights of these vulnerable subjects with cogni- in the moderate stage of dementia. Because of the
tive decline. changes in time in capacity to consent in dementia
subjects, there is a great need for valid, reliable and
efficient instruments to assess capacity to consent,
2 Epidemiology of consent which we will address next.
To explain highly sophisticated research techniques

as commonly used in current medical research, to 3 Assessing informed consent
dementia patients, who are generally born in an era
in which medicine was mostly “handmade”, is a for- The decision whether a potential subject is compe-
midable task. The omnipresence of cognitive deficits, tent or incompetent is a necessary and crucial part
often accompanied by visual, auditory and language of conducting medical research in the elderly. The as-
deficits in this population constrains acquiring, un- sessment of competency is required by the legal and
derstanding and adequately weighing the informa- ethical frameworks in which the research occurs.
tion provided by the researcher. Much has been pub- It is well known that the diagnosis of dementia does
lished on the informed consent issue with regard to not mean that a person is incompetent to consent.
geriatric research and on specific subtopics such as: Therefore, both in clinical practice and in dementia
decision making capacity, voluntariness, disclosure, research it becomes increasingly important to be
understanding, consent forms, authorization poli- able to judge the capacity to consent on an individual
cies, and others (e.g., see review of Sugarman et al., basis.
1998). Diminished understanding of informed con- Several instruments are available for the clini-
sent information was associated with older age and cal evaluation of competency to consent. Classically
fewer years of education. Older age was also associ- what is needed at least for competent judgement is
ated with decreased participation in research. Elderly summarized as:
patients and patients with below average IQ, impaired (1) ability to evidence a choice, (2) ability to
cognitive functions, and an external locus of control make a reasonable outcome of choice, (3) ability to
86
Informed consent in dementia research
understand information, (4) ability to manipulate sense of both decision making and their personal his-
information, (5) ability to appreciate the situation tory. A full discussion of the field of moral capacity
and its consequences. In a recent review Vellinga et to consent, which is still highly debated, is beyond
al. showed that all well-validated instruments used the scope of this chapter. However, it is clear that de-
to assess competency to consent aimed at covering pressed elderly subjects and elderly with personality
these topics (Vellinga et al., 2004). The best-validat- disorders, for whom personal history is often com-
ed instrument currently available proved to be the plex, require special geriatric psychiatry expertise
MacArthur Competency Assessment instrument, both in the assessment of capacity to consent, and in
which is available both for research aims and for the consent procedure as a whole.
clinical practice. The MacCAT-CR is the instrument To conclude, in a proper and state of the art as-
for the assessment of decision-making capacities sessment of the capacity to consent to research, the
to participate in clinical research. It was developed application of the best that competency assessment
by Applebaum and Grisso, with support from the instruments brought us (if possible the Mac-CAT-CR
Research Network on Mental Health and the Law or second best asking the right questions to check for
of the MacArthur Foundation (Grisso et al., 1997). competency on specific issues), should be combined
A MacCAT version for treatment related decision with knowledge of the patient’s hopes, beliefs and
making is also available (MacCAT-T), as well as a personal history. Only weighing and evaluating the
version to assess voting capacity. All three MacCAT results of the formal assessment of capacity to consent
instruments are based on asking critical questions and the evaluation of personal values, can result in a
to the subject whose competency should be judged. valid answer to the question whether a subject is fully
These questions address understanding of the re- competent to consent in the legal sense of the word.
search information, reasoning, appreciation of the Next, the invasiveness, risks, and burden on the one
choices, and finally making a choice. The MacCAT hand, and the profits of the study on the other hand,
instruments showed good validity and reliability should be weighed carefully, to determine the level
(Karlawish et al., 2002; Vellinga et al., 2004). Only the of capacity to consent needed for a specific study.
feasibility for wide spread use in clinical practice is The more risky and burdensome, the higher the re-
questionable, because one needs 30–60 min to apply quired standards of consent will have to be. The more
the instrument, and more importantly, it will take profit and the lower the burden of a study, the lower
training and specific expertise before the MacCAT- the standards of capacity to consent may be. This is
instruments can be used. However, the central idea called the principle of proportionality of the criteri-
of the MacCAT instruments, which consists of ask- on of capacity to consent, which is a cornerstone of
ing structured questions crucial for competency to proper research ethics (Table 1).
consent, can be applied in most consent procedures Finally, combining all these elements will guide
rather easily. the researcher the way out in the clinical dilemma of
A domain, which is not covered by the MacCAT
and all other assessment instruments, is the moral Table 1. The increase in emphasis on the quality of informed
consent and the capacity to consent needed for participation is
capacity of a subject, nor the emotional ability to
proportional to the risks and burden of a study
make a sound decision, which is in line with the life
history of a subject. Moral capacity overlaps with de- Research Minimal risk/ High risk/
burden burden
cision-making capacity, but is not fully contained by
it. Cognitively impaired persons, judged as incapable Non-therapeutic +++ ++++
to consent by the available instruments, for example Therapeutic + ++

subjects with dementia, may still be able to make Note: + to ++++: indicate that higher standards of capacity to
morally responsible decisions, based on a remaining consent are required
87
whether or not a subject with cognitive decline is ca- prove research participants’ understanding (Flory
pable to consent. The next challenge is how to involve and Emanuel, 2004). There is no direct reason to alter
patients with cognitive decline as much as possible in this conclusion for dementia research, but more re-
decision making, despite decline or even absence of search is highly needed here.
formal competency to consent.
5 Way out in research practice

4 Improving Informed consent
To research a sufficient quality of informed consent
Helping the subject to understand research informa- and to stimulate and not frustrate dementia research
tion as fully as possible, and ascertaining how well a joined task force is needed from researchers, jour-
the subject understands it, is the first prerequisite for nal editors, ethical review boards, politicians, grant
a valid assessment of informed consent. Important givers and Alzheimer’s disease societies. Alzheimer
conditions to reach these goals are extensive time for Europe made a clear policy standard on the research
the information process, and matching consent mate- ethics in dementia research including informed con-
rial in format and presentation to the cognitive, visual sent issues (Appendix). Here we addressed the chal-
and hearing capacities of frail elderly patients. So far, lenge that researchers have to meet when acquiring
most authors have focused on all kinds of visual and informed consent from demented subjects in an ethi-
hearing aids, such as: pictures, vignettes, storybooks cally sound manner. Researchers will not only have
and audio- or videotapes. However, Tymchuk and to deal with dilemma’s in trial design and outcome
Ouslander showed that these aids proved a distrac- variables, but also have to invest time and effort in
tion rather than an aid for elderly subjects (Tymchuk the acquisition of a proper informed consent, after a
and Ouslander, 1990). Educational training was also more formalised and probably witnessed assessment
suggested as a method of enhancing decision-making of the capacity to consent.
capacity. Awareness or if possible experience with the Currently, researchers should be advised to
diagnostic procedures, treatments or research meth- adopt a step-wise procedure, which starts with suffi-
ods, which are part of the study aimed for, will im- cient time and effort in the handing over the informa-
prove competency to consent, especially in subjects tion on the study aimed for. If feasible, a trial run of
with cognitive decline and dementia (Olde Rikkert the research aimed for might help to improve under-
et al., 1997). standing of the study procedures in demented and
Effective strategies to improve the understand- depressed subjects as well as in subjects without psy-
ing of informed consent information should be con- chogeriatric illnesses. This is important because un-
sidered when designing materials, forms, policies, derstanding of research information is a prerequisite
and procedures for obtaining informed consent. Oth- for weighing and appreciating the risks and benefits
er than empirical research that has investigated dis- of a study. The next step consists of asking whether
closure and understanding of informed consent in- the fundamental issues needed for informed consent
formation, little or no systematic research has exam- are met by a potential research subject. The quality
ined how to improve informed consent in dementia of consent which is needed, is directly proportional
research. Efforts to improve understanding through to the risk and burden of the study on the one hand,
the use of multimedia and enhanced consent forms and the profits on the other. In such a way, informed
have had only limited success (Flory and Emanuel, consent can be judged irrespective of the diagnosis
2004). Having a team member or a neutral spend made.
more time talking one-by-one to study participants Generally, mentally incompetent subjects should
appears to be the most effective available way to im- not be included in research, unless the research is
88
judged necessary to promote the health of the popu- Those who are close to the patient are generally most
lation represented and this research cannot be per- knowledgeable about what the patient would have
formed on legally competent persons. Moreover, such wanted (Hardwig, 1993).
research should be possible only if the physical and Kim et al. (2005) showed that participants in a
mental condition that prevents obtaining informed research study did not shift the burden of research
consent is a necessary characteristic of the research onto others (whether society or loved ones). In addi-
population. tion, it was observed that respondents are cautious
Special precautions are necessary if the subjects in their attitude when they are responsible for their
with cognitive decline are judged to be incapable to loved ones.
consent, and did not sign an advance directive in In sum, researchers have to meet the serious
which they state to want to participate in dementia challenge of an adequate informed consent proce-
research. For a research subject who is under legal dure, in case they want to carry out studies on the
guardianship, the investigator must obtain informed vulnerable subjects with cognitive decline or with
consent from the legally authorized representative in dementia. Apart from the obligations expressed by
accordance with applicable law. This should even be research councils’ and journals’ guidelines, research-
added to a positive advance directive. ers should be fully aware of the societal and scientific
In general, for dementia research we advocate a responsibilities they bear in this type of research with
dual consent procedure, in which the researchers ac- fragile subjects. It is highly relevant that relevant de-
quires consent of the patient, if capable to consent, as- tails of the assessment of capacity to consent and of
sent (i.e., agreement as far as the study is understood special measures applied in informing the elderly are
and weighed) of the patients who are judged not ( ful- published as well. A good consent procedure should
ly) capable to consent, and informed consent by the be regarded as important as the research design,
proxy. In the literature a lot of terms are used to de- or the selection of the intervention or the outcome
scribe the procedure in which a third party consents measures in dementia research, by all professionals
for someone else, most often a relative. “Substituted involved. Ethical research committees and the pa-
judgment”, “proxy consent” and “surrogate consent” tients’ and carers’ societies are in the best positions
are used to describe this process. Although there may to help researchers meet the great challenge of rel-
be differences between them, the main characteris- evant, but at the same time ethically sound dementia
tics are (1) that a person consents for someone else research.
and (2) that this method of soliciting consent is used
to extend the subject’s autonomy. Several arguments
can be given in favour of third party consent. Most Appendix
arguments are in some way related to the argument
Summary of position paper on research with people with de-
that third party consent respects the autonomy of the mentia (www.AlzheimerEurope.com)
patient/research subject as much as possible. A per- The present paper constitutes the input of Alzheimer Eu-
son other than patient/research subject consents on rope and its member organisations to the ongoing discussions
behalf of him/her. By this means the research subject about the participation of people with dementia in research
can to some degree participate in the decision via and in particular the Council of Europe Convention on Bio-
his/her “surrogate”. medicine and Human Rights and the Draft Additional Proto-
col to the Convention on Biomedical Research.
In general, persons who have most interests – for
For the participation of people with dementia in clinical
example because they are responsible for daily care – trials, the organisation refers to the specific position paper it
are most involved in the decision. These people who has adopted with regard to this question.
are caring for the patient probably (more likely than Alzheimer Europe would like to recall a few general prin-
others) want the best for the patient (Hardwig, 1993). ciples which guide this present response:
89
• A diagnosis of dementia does not in itself constitute a Based on its current information, Alzheimer Europe does not
lack of legal capacity. endorse the participation of people with dementia in research
• Capacity is not an all or nothing affair. People with demen- without a potential benefit for the participants unless the per-
tia should therefore be involved in decisions concerning son with dementia decided to participate him/herself and
research even if they are considered “unable to consent”. had sufficient capacity to make such a decision. Such decision
• People with dementia have a right to participate in re- could have been stated in an advance directive.
search, should they so desire.
• People with dementia should be encouraged to write
advance directives covering the issue of participation in
research. References
• Subject to the fulfilment of certain conditions, a legal
representative should be allowed to consent to partici- Appelbaum PS, Grisso T, MacCat-CR (2001) The MacArthur
pate in research on behalf of a person with dementia who Competence Assessment tool for clinical research. Profes-
is no longer able to consent him/herself (provided that sional Research Press, Sarasota, USA
they take into account his/her past and present wishes). Buckles VD, Powlishta KK, Palmer JL, Coats M, Hosto T,
Buckley A, Morris JC (2003) Understanding of informed
On the basis of these principles, Alzheimer Europe has devel- consent by demented individuals. Neurology 61(12): 1662–
oped the following position with regard to the participation of 66
people with dementia in research: Flory J, Emanuel E (2004) Interventions to improve partici-
pants’ understanding in informed consent for research: a
• In the early stages of the disease, people with dementia systematic review. JAMA 292: 1593–601
can themselves consent to research or declare their will- Grisso T, Appelbaum PS, Hill-Fotouhi C (1997) The MacCAT-T:
ingness to participate in research in an advance directive a clinical tool to assess patients’ capacities to make treat-
– irrespective of whether such research is likely to entail ment decisions. Psychiatr Serv 48: 1415–19
a direct personal benefit. Hardwig J (1993) The problem of proxies with interests of their
• A doctor with the relevant expertise and who is not own. J Clin Ethics 4: 20–27
linked to the research should assess the level of capacity Hearnshaw H (2004) Variations, across eleven European coun-
of the person with dementia in order to ensure that s/he tries, in research ethics requirements for non-invasive, in-
has sufficient mental capacity to take such a decision terventional study. BMJ 327: 140–41
and is fully aware of the consequences. Karlawish JHT, Casarett DJ, James BD (2002) Alzheimer’s
• Legal representatives should be able to consent on be- disease patients’and caregivers capacity, competency and
half of people with dementia to participate in research, if reasons to enrol in early-phase Alzheimer’s disease clinical
the following main conditions are met: trial. J Am Geriatr Soc 50: 2019–24
– the potential benefit for the person’s health is clear- Kim SYH, Kim HM, McCallum C, Tariot PN (2005) What do
ly greater than the possible risks; people at risk for Alzheimer’s disease think about surrogate
– the risk of causing discomfort or distress is mini- consent for research. Neurology 65: 1395–1401
mal; the research has been approved by an inde- Lavelle-Jones C, Byrne DJ, Rice P, Cuschieri A (1993) Fac-
pendent ethics committee; tors affecting quality of informed consent. BMJ 306: 885–
– the same results could not be obtained with other 90
subjects; Olde Rikkert MGM, ten Have H, Hoefnagels WHL (1996) In-
– the legal representative does not benefit financially formed consent in biomedical studies on ageing: survey of
from the decision; four journals. BMJ 313: 1117
– s/he has been specifically authorised to give con- Olde Rikkert MGM, van den Bercken JHL, ten Have HAMJ,
sent by a court or the person with dementia; Hoefnagels WHL (1997) Experienced consent in geri-
– the necessary safeguards have been taken to pro- atric research. A new method to optimise the capacity
tect the privacy of the person with dementia and to to consent in frail elderly subjects. J Med Ethics 23: 271–
respect his/her dignity. 76
• In all cases, an independent adviser should be appointed Olde Rikkert MGM, Lauque S, Frolich L, Vellas B, Dekkers W
with responsibility for the safety and welfare of the par- (2005) The practice of obtaining approval from medical re-
ticipants. search ethics committees: a comparison within 12 Europe-
90
an countries for a descriptive study on acetylcholinesterase Tymchuk AJ, Ouslander JG (1990) Optimizing the informed
inhibitors in Alzheimer’s dementia. Eur J Neurol 12: 212– consent process with elderly people. Educ Geront 16: 245–
17 57
Sugarman J, McCrory DC, Hubal RC (1998) Getting meaningful Vellinga A, Smit JH, van Leeuwen E, van Tilburg W, Jonker C
informed consent from older adults: a structured literature (2004) Instruments to assess decision-making capacity: an
review of empirical research. J Am Geriatr Soc 46: 517–24 overview. Int Psychogeriatrics 16: 397–419
91
Chapter 10
ASSESSMENT OF FITNESS TO DRIVE, POSSESSION OF PROFESSIONAL DRIVERS’

LICENSE, POSSESSION OF FIREARMS, AND PILOT’S CERTIFICATE IN CLIENTS
WITH DEMENTING CONDITIONS
Kurt Johansson and Catarina Lundberg
1 Introduction ing capacity and communicate this to the driver, this

often leads to a heated discussion. All the arguments
There is a high degree of likelihood that impaired from the relatives are rejected and the driver is left
cognitive functions affect traffic safety and traffic be- with a feeling of anger and resentment, but does not
haviour. The risk of crash involvement may increase make any changes in his or her driving. On the other
due to the cognitively impaired driver’s own mistakes hand, relatives often can take measures to prevent
or his/her diminished ability to parry the mistakes access to the car, for example by manipulating the
of other road users. Therefore, it is important, when engine (removing the cable to the distributor etc.),
assessing memory impairment or dementia, also to or even selling the car. But we have also seen some
consider the issue of automobile driving, operating cases where demented persons have bought a new
trains or aircraft etc. The ability to take in and cor- car instead of the “broken-down” old one. But, in the
rectly process visual input is also an important ability opinion of the present authors, driving should have
for hunters, which raises the issue of the possession been terminated a long time before the intervention
and use of firearms. Psychotic symptoms in a dement- of family members because of an excessive crash risk.
ed person entail a clear risk of shooting at imaginary However, there remains an important role for rela-
pursuers, or a depressed person may use the firearm tives: that of preventing the patient from gaining ac-
to commit suicide. Impaired cognitive functions do cess to a motor vehicle.
not increase the crash risk only of drivers of automo- A study by Hakamies-Blomqvist et al. (1996)
biles, trains and aircraft, but, probably also for drivers showed that the Finnish system of medically screen-
of mopeds and bicycles. Increased instability when ing all license holders at the age of 70 did not im-
riding a bicycle is not seldom reported by patients at prove traffic safety. On the contrary, there was even
our memory clinic (KJ, personal experience), but has evidence that traffic safety was affected negatively
not been systematically investigated. because potentially safe drivers stopped driving and
Judgement and insight are important functions started using less safe modes of travel (by foot or bi-
in the perspective of adaptation or restriction of ac- cycle), thus becoming unprotected road users. One
tivities. One could say that a person’s unawareness possible explanation for this could be that security-
of his or her own limitations makes it impossible to oriented drivers stop driving, but that those lacking
compensate for these limitations and therefore does awareness of their impairments renew their licenses
not lead to a limitation or cessation of driving. and keep on driving with an increased crash risk.
From clinical experience we know that a cogni- Together with the results from a study by Johansson
tively impaired person lacking awareness views him- and co-workers (1996), showing that a standard
or herself as the good driver he or she has “always” medical examination cannot distinguish drivers with
been. When relatives observe a deterioration of driv- collisions from either controls or driver with other of-
Chapter 10: K. Johansson and C. Lundberg
fences, these findings caused the Finnish government ever, risk estimates presented in scientific literature
to introduce a new law making the reporting of medi- are not yet sufficient to constitute a base for such deci-
cally unfit drivers mandatory for physicians. sions. The consensus meeting on Alzheimer and Driv-
In some countries, such as Sweden and Fin- ing in 1994 (Johansson and Lundberg, 1997) made the
land, physicians have the obligation to report unfit recommendation that individuals with moderate or
drivers. In other countries, such as Spain, there is a severe dementia should not drive. Some authors ar-
regular medical screening of older drivers. In some gue that individuals with the diagnosis of dementia
countries, physicians must also report unfit firearm should not drive (Dubinsky et al., 2000). And finally,
holders. A screening procedure concerning all older we also know, that individuals in a “preclinical state”
drivers/license holders has advantages as well as dis- of dementia are overinvolved in crashes (Johansson
advantages. Among the advantages is the view that et al., 1997; Johansson et al., 1996). In consequence,
the procedure is fair: all license holders are targeted. each member state of the EC must decide on its own
In addition, for countries having an excess of physi- guidelines or regulations on dementia and driving. In
cians, this gives job opportunities. Among the disad- Sweden, for example, persons with dementia are not
vantages is the fact that there are no really relevant allowed to hold driver’s licenses in group II. In group
selection methods for screening (whether age-based I, however, possession can be allowed if the dementia
or diagnosis-based). In addition, as shown later in is in a mild phase and certain requirements on cog-
this chapter, a useful cognitive screening battery does nitive functions are met (for details, see chap. 10 in
not (yet) exist. http://www.vv.se/filer/4796/9889eng000915.pdf).
In addition, screening can be viewed as a waste
of resources, because the majority of screened drivers
are healthy, which makes the cost-benefit of screen- 2 The assessment of dementia or cognitive
ing low. The cost of the screening procedure places impairments with respect to automobile
a burden either on the individual or on society (both driving
of whom have limited resources). As an alternative
to general screening at regular intervals, it might be When assessing persons with symptoms of demen-
possible to carry out a medical/cognitive evaluation tia or cognitive impairments, the health professional
of those drivers who are involved in car crashes. This must also take into consideration the possession of
would not only offer the opportunity to detect cogni- a driver’s license etc. In addition, demands on health
tive impairment, but also other medical conditions and driving fitness are generally higher for holders of
influencing traffic safety. licenses of higher categories (group II). This is rea-
The EC directive on driver licensing (2006/126/ sonable, since professional drivers have a higher ex-
EC, Addendum III) does not mention dementia, nor posure to crash risk than drivers of private cars.
does it give any guidelines concerning cognitive im- Whether local regulations require it or not, it is
pairments. Regulations concerning drivers with cog- advisable to document the possession of licenses of
nitive impairment or dementia differ between states. all types in the patient file together with advice or
Ideally, regulations should be based on a political de- recommendations given to the patient etc.
cision as to which level of elevated crash risk that can Concerning the assessment of fitness to drive,
be tolerated by society. (For example, it might be ar- five different levels of assessment can be distin-
gued that persons with the disease X, who have twice guished.
the risk of healthy drivers of their own age, can still
be accepted in traffic, but that persons with the dis- (1) A clinical assessment, based on the normal as-
ease Y, whose risk if multiplied by eight compared to sessment procedure for memory impairment/
healthy drivers, should not be allowed to drive.) How- dementia.
94
Assessment of fitness to drive, possession of professional drivers’ license…
(2) Certain tests developed for the assessment of fit- erate and severe dementia should not be driving. In
ness to drive Sweden, consequently, medical regulations state that
(3) Neuropsychological tests intended to assess the license of a moderately or severely demented per-
driving fitness son should be revoked.
(4) Assessment in a driving simulator There are only three studies (Brown et al., 2005;
(5) An in-car, in-traffic assessment Ott et al., 2005; Fox et al., 1997) where a physician rat-
ed the patient’s fitness to drive in comparison to the
Levels 2–5 need specific competencies that are not outcome of an on-road test (ORT). Two of the stud-
always available at the “memory clinic” when assess- ies used the same material and one of the physicians
ing dementia symptoms. There is no “golden stand- participated in both studies. One “very experienced
ard” against which to measure the predictive power dementia specialist” had 78% correct classifications
of different examination methods to determine (pass or fail ORT), as compared to the “lowest per-
whether a patient is fit to drive. However an “on-road forming” one, (a general practitioner) with only 62%
test” in real traffic is commonly considered as a “gold- correct classifications (Ott et al., 2005). Between 25
en standard” despite several limitations. and 35% of the patients who were clinically consid-
ered as unfit to drive nonetheless passed the ORT.
The conclusion in the third study (Fox et al., 1997) is
2.1 Clinical evaluation by a physician at the that neither the physician nor the psychologist can
memory/dementia assessment unit predict the outcome of an ORT.
Here, the physician or the assessment team has ac- Summary

cess to all material from the diagnostic procedures
A clinical assessment alone, even when performed by
(medical history, own observations, different results
an experienced “dementia physician”, does not give
from tests used, such as the score on the MMSE (Fol-
sufficiently reliable information on driving fitness in
stein et al., 1975), Clock Drawing Test (Sunderland
subjects with mild or very mild dementia (due to low
et al., 1989), and other neuropsychological test re-
specificity). Individuals with dementia of mild/very
sults, etc.). Sometimes, there are results from assess-
mild degree or cognitive impairment should there-
ments of ADL and IADL, carried out by an occupa-
fore be assessed by specialised staff with respect to
tional therapist. Reports by family members about
fitness to drive. Cases of moderate and severe de-
general cognitive decline and impaired visuospatial
mentia (CDR 2–3 (Morris, 1993) or MMSE ≤18) can be
ability can sometimes imply a decline in driving abil-
dealt with by any physician and should result in the
ity. A study by Wild and Cotrell (2003) reported that
termination of driving. The possibility of falsely high
individuals with Alzheimer’s disease are often unre-
or false low scores on MMSE must be considered, es-
liable in their ratings of their driving skill and that
pecially in vascular disease or in cases with high or
their ratings are systematically higher than those of
low premorbid functioning.
a professional evaluator. Family members can feel a
The experience from previous studies indicates
certain anxiety about driving ability, but tend to un-
that a clear cutoff score for different tests in mild/
derreport specific problems occurring during driving.
mild dementia, with respect to continued driving,
Many studies express doubts concerning the reliabil-
will be difficult to establish, if this is ever the case.
ity of family members’ reports on driving ability.
In most cases, the memory assessment has re-
sulted not only in a diagnosis, but also a staging of
the severity of disease. According to a consensus doc-
ument (Lundberg et al., 1997), persons with a mod-
95
2.2 Special tests developed for assessment of the method can predict pass or fail driving result at
fitness to drive an ORT in a group of mild or very mild dementia, de-
spite strong correlations between reduction in UFOV
The SDSA (Stroke Driver Screening Assessment) with and ORT scores. For quite a high proportion of the
its later developed Nordic version (NorSDSA) can be patients participating in the study by Duchek and co-
used also to assess individuals with cognitive impair- workers, the UFOV proved too complex. Hence, the
ment or dementing conditions. The battery test con- missing data relating to those individuals do not nec-
sists of 4 subtests and yields a summary score, cal- essarily indicate that their useful field of view was re-
culated by using given formulas, and this summary stricted. Rather, their inability to complete the UFOV
score indicates a positive or negative recommenda- can be considered as a marker of general cognitive
tion. The test should be used by occupational thera- impairment.
pists and psychologists and a formal education of us-
ers is recommended. Summary
The UFOV (Useful Field of View) is a PC-based NorSDSA is used in the Nordic countries. The test
test expressing the result as a levels of crash risk. It manuals indicates reference levels also for individu-
takes about 15–20 minutes to administer. The pro- als with dementia. The summary score was able to
gram is self-instructing (in English), but it is recom- predict the result of an ORT with a specificity of 72%
mended that the test leader be an especially trained and a sensitivity of 66%. There are, as yet, no pub-
health professional (preferably an occupational ther- lished studies with SDSA and AD patients.
apist or a psychologist). It should be noted that the UFOV in used in some centres in Sweden, but
PC-based version used is not entirely comparable to evidence is missing for the discriminating ability
the original version (with a very large screen) used in among patients in an early phase of dementia.
the USA and for the validation studies.
SDSA: Published studies exists for stroke, trau-
matic brain injuries and Parkinson’s disease. For 2.3 Neuropsychological tests used to assess
Alzheimer’s disease, there is one study showing a fitness to drive
certain ability to discriminate AD patients from con-
trols, but the relation to ORT was not tested. The sub- For a long period of time, neuropsychological tests
tests of SDSA were included in a study by Lincoln et have been used in attempts to find a relation between
al. (2006), where only the traffic sign recognition test crash risk, driving ability and test results, with the goal
showed a tendency to discriminate between safe and to predict fitness to drive. For ethical reasons, it is not
unsafe drivers. possible to make a study where cognitively impaired
UFOV: A meta-analysis from 2005 (Clay et al., drivers are allowed to continue to drive in order to
2005) with 8 included studies (all with controls) analyze future crash involvement. The alternative left
showed a strong consistency between the studies is to relate the test results to ORT. In the literature,
(correlations between results on the UFOV and car frequently investigated domains of importance for
crashes, driving simulator results and results from driving fitness (Reger et al., 2004) are attention and
ORTs, respectively). concentration (that also include speed components),
Only three of the studies included individuals executive functions, memory, and visuospatial skills.
with Alzheimer’s disease (Duchek et al., 1998; Cush- In addition, it would appear to be important to deter-
man, 1996; Rizzo et al., 1997) and matched controls. mine whether features such as emotional instability
One study used the results from a driving simulator and increased fatigue are present.
and two used the results from an ORT as outcome The neuropsychological test gives the clinician
measures. None of the latter studies has showed that an important measure of impairments within dif-
96
ferent cognitive domains that are considered as im- ized tests in clinical praxis”. The study identified “a
portant for traffic safety. There is, however, no docu- gap in research, hindering the developing of evidence
mented knowledge about how the degree of severity based guidelines”.
of the cognitive impairment affects driving ability, or
how decline in different domains interact. One partic- Summary
ular example is how cognitive decline interacts with No neuropsychological test targets one single cogni-
a visual acuity at the lower limit for the possession of tive domain or function. Neuropsychological tests are
a driver’s license. Frequently, the studies show a cor- mostly multifactorial, meaning that they tap more
relation between test variables and points obtained than one cognitive domain. Furthermore, some do-
during a test drive. However, when the outcome from mains related to complex cognitive functions have
a driving test is dichotomized as pass or fail, the part several aspects. For example, attention can be sub-
of false negative test results is not acceptable. divided into sustained attention, divided attention,
One meta-analysis has been performed by Reger and selective attention. This situation makes it even
et al. (2004) where 27 studies with neuropsychologi- more difficult to evaluate and develop cutoff values.
cal test results were analyzed. Because a very large The conclusions from the single published meta-
number of different test have been used, the meta- analysis must be interpreted with caution when the
analysis was carried out with cognitive domain at authors state that neuropsychological tests have only
one side and outcome in terms of ORT on the other a small ( for attention) to moderate ( for visuospatial
side. In studies with control groups, the neuropsycho- ability) relation to results from ORT when predict-
logical test results can predict the ORT outcome. But ing pass/fail in a group of individuals with dementia
within a group of individuals with cognitive impair- symptoms of severity between CDR 0,5 and 1,0. On
ments or mild dementia to identify those who has an the contrary, the tests are often useful in selecting pa-
increased cash risk or decline in driving ability for tients with impaired driving ability who need a closer
that, those tests are not so useful. Tests of visuospa- evaluation.
tial ability are seen as the most valuable in predicting
crash risk, while visuospatial ability and attention
both have small to moderate effect in predicting ORT 2.4 Evaluation in a driving simulator
results. Executive functions showed a low relation-
ship to ORT results, as did other neuropsychological A driving simulator gives the opportunity to perform
test results. Commonly used mental status measure- assessments under standardised conditions. At the
ments such as the MMSE and the CDR do not give same time, it is possible to add hazardous traffic situ-
sufficient information to serve as the sole basis on ations that cannot be predicted in real traffic. A simu-
which to make a decision concerning continued li- lator has, however, many drawbacks, combined with
cense holding (Diegelman et al., 2004), but they can a high investment cost. Taken together, this means
be used to select patients who should be referred to that simulator driving does not, at present, have the
evaluation (Freund et al., 2005). potential to become a general assessment tool, al-
After the publication of the meta-analysis, Grace though the costs for a single drive is low. The type of
and co-workers (2005) presented a study showing simulator as well as the design of scenarios increase
that the Trail Making test, parts A and B and the Rey the likelihood that a cognitively impaired person will
Osterreith Complex Figure are the most useful tests have difficulty to adjust the test environment and
to predict ORT results. However, sensitivity and spe- therefore obtain worse results than they would have
cificity figures were not shown. A systematic review when tested on the road, in a familiar vehicle and in
by Molnar et al. (2006) concludes that “Without vali- familiar surroundings. In addition, problems of mo-
dated cutoff values it is impossible to use standard- tion sickness, that appear to affect persons with cog-
97
nitive impairment to a higher degree than non-im- teaching a learner driver is not the same as correctly
paired test drivers, should not be overlooked. evaluating driving performance (in an experienced
In one study (Rizzo et al., 2001), evidence was driver).
presented that demented drivers react differently In some countries (i.e., Australia, Belgium, or
than controls in an emergency situation at a road Canada), specifically trained occupational therapists
crossing. There is no study showing evidence of a have the role of driving assessors. Since occupational
relationship between simulator results and on-road therapists have a specific expertise in the evaluation
results in a group of cognitively impaired/mildly de- of activities, this makes them highly suitable to per-
mented drivers. form driving assessments in a clinical context.
The performed studies in a driving simulator It has also been shown (Lundberg et al., 2003)
shows an effect on group level (Alzheimer’s disease that the outcome of an on-road test depends on the
compared to healthy controls), but not on an indi- car used: whether it is familiar to the driver or not.
vidual level, which is normally the clinical question. Furthermore, weather and traffic conditions can in-
There is, as yet no study of mildly demented drivers fluence performance, as well as unfamiliarity with
(CDR 0,5 – 1) showing an agreement between simu- the test situation. If ORTs are used as part of the med-
lator results with cutoff scores on one hand, and ical evaluation of fitness to drive, there is a need for
pass/fail at an ORT or future crash involvement on specifically trained/educated staff.
the other hand. If an ORT is performed under the supervision
of an official driving examiner, a fail result will more
Summary or less automatically result in a license revocation. If
There is at present no evidence in support of the use the ORT is performed within a clinical context, the
of driving simulator in a clinical context. results can be interpreted in a more sensitive way
and with taking into consideration other test results
or impairments.
2.5 On road test Because the driver’s license normally will be re-
voked if the patient fails the ORT, it is impossible to
If “on-road tests” are used as the “golden standard” know whether continued driving would have led to
for fitness to drive, in spite of their limitations, an subsequent crash involvement or not.
on-road test will give the definite answer for the in-
dividual driver. But an acceptable result from ORT Summary
does not necessarily mean that the driver is fit to An ORT of some type should be a recourse if the pre-
drive, because of the limitations inherent to the on- vious evaluation is inconclusive.
road test.
An ORT can be performed in different ways de-
pending on the particular situation and local regula- 2.6 Conclusions
tions. It is possible to carry out the road test under
the supervision of an official driving examiner ( from There is no existing strong evidence for the ability of
the National Road Administration, or a similar offi- different tests and assessment methods to discrimi-
cial organisation). One problem in this case is that nate fit from unfit drivers in a group of persons with
the evaluator does not have the medical knowledge very mild or mild dementia.
to link specific medical/cognitive impairments to If there is a persisting uncertainty about fitness
specific aberrations of driving behaviour. It is also to drive after an evaluation, an ORT is recommended,
possible to use an experienced driver instructor. This but preferably after an assessment at an specialized
can, however, sometimes be problematic, because unit with experienced staff.
98
Not even tests recommended by the American nursing home or is bedridden and it is impossible for
Medical Association or the Canadian Medical Associ- him or her to get access to a car.
ation guidelines (e.g., the MMSE, Clock drawing test, If there are reports from family members about
Trails – B) can discriminate between currently safe or impaired driving ability in combination with cogni-
unsafe drivers with very mild or mild dementia. tive impairments, this is a strong indication that an
assessment of fitness to drive should be performed.
Pilot certificate Positive ratings from relatives are often not reliable.
Reports of car crashes or “narrow escapes” are, of
The cognitively impaired holder of a pilot certificate
course, to be taken very seriously.
must be discussed with the aviation authorities. High
When diagnosing cognitive impairment or mild
demands on cognitive functioning do not only con-
dementia, it is important that an assessment of fit-
cern pilots, but also aircraft technicians and flight
ness to drive should be considered. This assessment
controllers.
should be performed by a person/team with special
knowledge about cognitive impairments and their
Possession of firearms
relation to traffic safety. Domains such as attention,
The scientific literature is very limited, only four pa- judgement and memory, visuospatial and psychomo-
pers concerning the issue were found in a literature tor functions are considered as particularly impor-
search. No recommendations were given, except for tant. The patient’s insight concerning his or her own
asking about the possession of firearms and limiting impairments is important and necessary in order to
access to them when patients are demented. be able to compensate for them. If results of the as-
sessment are to be used as a basis for a license revo-
cation, it is important that the investigation methods
3 Provisional guidelines (until evidence and cutoff levels are validated for the situation in the
studies are published) country where they are used.
When the clinical assessment does not yield a
3.1 Driver’s license conclusive result, an ORT is recommended under the
supervision of a competent evaluator (driving evalu-
The issue of license holding is a very sensitive and ator or occupational therapist).
the issue of individual mobility is often related to car If the evaluation result indicates that the patient
driving. In couples of the age groups that are con- is fit to continue driving, patients with a dementing
cerned, often only the male party is licensed. There- disease should be reassessed once a year or more fre-
fore, a revocation will have a heavy impact on mobil- quently, depending on the rate of cognitive decline
ity and social life etc. In consequence, the issue of and aetiological diagnosis.
license holding must be discussed from the very start For professional drivers, one must take into con-
of the memory assessment. This makes it possible to sideration the increased exposure to crashes, as com-
progressively reduce driving in a controlled fashion pared to an older driver, whose driving may be limited
as the disease progresses, and alternative modes of to one or two weekly trips to the supermarket.
transportation can be found. Depression and crises
after a licence revocation are not unusual.
The possession (and type) of a driver’s license 3.2 Railroad traffic
should be documented in the patient’s file.
In case of moderate and severe dementia, the pa- Regulations differ between countries, but cognitive
tient should stop driving and the license withdrawn. demands on train or tram drivers are generally higher
Exceptions can be made if the patient is living in a than for private car drivers.
99
3.3 Pilot certificate and aviation-related Cushman LA (1996) Cognitive capacity and concurrent driv-
activities ing performance in older drivers. IATSS Research 20(1): 38–
45
Diegelman NM, Gilbertson AD, Moore JL, Banou E, Meager MR
Here, regulations exist on a European and global lev- (2004) Validity of the clock driving test I predicting reports
el. Generally, no cognitive impairments are allowed of driving problems in the elderly. BioMed Central Geriat-
for aviators or other personnel involved in air traffic rics 4: 10
safety. Dubinsky RM, Stein AC, Lyons K (2000) Practice parameter:
risk of driving and Alzheimer’s disease. Neurology 54:
2205–11
Duchek JM, Hunt L, Ball K, Buckles V, Morris JC (1998) Atten-
3.4 Firearms
tion and driving performance in Alzheimer’s disease. J Ger-
ontol Psychol Sci 53B: P130–141
The permission (license) to possess firearm(s) are, as Folstein MF, Folstein SE, McHugh PR (1975) “Mini-Mental-
a rule, related to a purpose, either target shooting or State” – A practical method for grading the cognitive state
hunting. If a person is licensed to use the firearm for of patients for the clinician. J Psychiatr Res 12: 189–98
hunting, he or she is also allowed to shoot on targets, Fox GK, Bowden SC, Bashford GM, Smith DS (1997) Alzheim-
but the opposite is not true. Shooting on targets be- er’s disease and driving: Prediction and assessment of driv-
comes an overlearned skill after long training and is ing performance. J Am Geriatr Soc 45: 949–53
Freund B, Gravenstein S, Ferris R, Burke BL, Shaheen E (2005)
normally performed under controlled circumstances.
Drawing clocks and driving cars. J Gen Int Med 20(3): 240–
It is therefore possible for an individual with mild de- 44
mentia to keep this hobby for some time, although he Grace J, Amick MM, d’Abreu A, Festa EK, Heindel WC, Ott BR
or she is not allowed to hold a driver’s license. Hunt- (2005) Neuropsychological deficits associated with driving
ing requires a good perception and fast reactions. performance in Parkinson’s and Alzheimer’s disease. J Int
The hunter must clearly understand what he or she is Neuropsychol Soc 11(6): 766–75
aiming at, in order to avoid shooting a fellow hunter Hakamies-Blomqvist L, Johansson K, Lundberg C (1996) Medi-
cal screening of older drivers as a traffic safety measure – a
or the neighbour’s horse. Restricting hunting is there-
comparative Finnish-Swedish evaluation study. J Am Geri-
fore more important than restrict target shooting at a atr Soc 44: 650–53
shooting range. Duty weapons for some professional Johansson K, Bogdanovic N, Kalimo H, Winblad B, Viitanen M
categories (military, police, customs etc) must not be (1997) Alzheimer’s disease and apolipoprotein E ε4-allele
forgotten. in older drivers who died in automobile accidents. Lancet
If there is a risk of suicide (e.g., when a person re- 349: 1143–44
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(1996) Can a physician recognize an older driver with in-
must be taken care of.
creased crash risk potential? J Am Geriatr Soc 44: 1198-04
Johansson K, Lundberg C (1997) The 1994 International Con-
sensus Conference on Dementia and Driving: A brief re-
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view. J Am Geriatr Soc 54: 1809–24 Rizzo M, McGehee DV, Dawson J, Nawrot M (2001) Simulated
Morris JC (1993) Clinical Dementia Rating (CDR): Current ver- car crashes at intersections in drivers with Alzheimer’s
sion and scoring rules. Neurology 43: 2412–14 disease. Alzheimer Dis Assoc Disord 15(1): 10–20
Ott BR, Anthony D, Papandonatos GD, d’Abreu A, Burock J, Sunderland T, Hill JL, Mellow AM, Lawlor BA, Gunders-
Curtin A, Wu CK, Morris JC (2005) Clinician assessment of heimer J, Newhouse PA, Grafman JH (1989) Clock drawing
the driving competence of patients with dementia. J Am in Alzheimer’s disease. A novel measure of dementia sever-
Geriatr Soc 53(5): 829–33 ity. J Am Geriatr Soc 37(8): 725–29
Reger MA, Welsh RK, Watson GS, Cholerton B, Baker LD, Craft Wild K, Cotrell V (2003) Identifying driving impairment in
S (2004) The relationship between neuropsychological Alzheimer’s disease: A comparison of self and observer re-
functioning and driving ability in dementia: A meta-analy- ports versus driving evaluation. Alzheimer Dis Assoc Dis-
sis. Neuropsychology 18(1): 85–93 ord 17(1): 27–34
101
Chapter 11
PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: AUSTRIA
Johannes Wancata and Josef Marksteiner
1 Introduction with approximately 0.5% of the population currently

under guardianship. For persons suffering from de-
Human dignity is a basic right which is guaranteed by mentia the same laws are applied as for all other per-
the Austrian law to each citizen including all persons sons who have a (partially) impaired ability to make
with cognitive disabilities. This means that all citi- their own decisions (e.g., persons with other severe
zens, even those with dementia and other cognitive psychiatric disorders or mental retardation). Usu-
impairments, have the right for self-determination ally an independent evaluator is asked for an official
and personal autonomy. The idea of human dignity evaluation if somebody is impaired with regards to
includes the right that somebody whose ability to the ability to make competent decisions. The final
practise self-determination and personal autonomy decision as to whether someone needs a legal repre-
should be supported by a legal representative in or- sentative is made by the court. Further, based on the
der to keep the chance to use his or her rights. independent evaluator’s assessment, the court must
specify the tasks for which somebody needs a legal
representative (e.g., financial affairs, decision about
2 Law on guardianship for disabled people medical treatment). The legal representative may be
a relative of the patient, a lawyer or a social worker.
Guardianship is covered in the Civil Code (das Allge-
meine Bürgerliche Gesetzbuch) and arranged by way
of court settlements. It has been in force since 1984 3 Legal assistance and representation
and applies to all people whose main place of resi-
dence is in Austria. A guardian is defined as a person Despite this legal framework only a minority of de-
appointed by the courts to represent a mentally disa- mentia sufferers have a legal representative. One of
bled or mentally ill person in the legal affairs specified the main reasons for this discrepancy is that both pa-
in the court appointment order. The guardianship tients themselves as well as their family caregivers try
measure removes the “legal competence” of the person to avoid a legal representative. Many patients do not
concerned in areas covered by the court appointment want do have a legal representative because this im-
order. European legislation varies in terms of who can plies (in their opinion) “to be nuts”. Since dementia
ask for the appointment of a guardian. The disabled is stigmatised as many other psychiatric disorders,
person may not undertake any legal acts within the patients try to avoid that anybody else is recogniz-
scope of the guardian’s responsibilities, without ex- ing their mental disorder. Family caregivers often try
press or tacit agreement from the guardian. to avoid stigmatisation of their loved family member
Exception: Legal acts in minor day to day mat- and, therefore, consider the patients view. In addi-
ters may be undertaken by the person concerned tion, some families fear that the whole family could
on their own account. In the last 10 years in Austria, be stigmatised because of the patient’s mental illness.
there has been a dramatic increase in guardianship, If a patient with dementia becomes incompetent,
Chapter 11: J. Wancata and J. Marksteiner
family caregivers often try to find their own methods main difficulty with advance directives seems to be
to solve everyday problems. that with the available training programmes very few
In nursing homes, the nursing staff often makes service users can be enthused to draft. Until now, it
decisions instead the patients even if the patient is unclear what happens if a person suffers from de-
has no legal representative. The main reason for this mentia for a period longer than five years.
practice is the legal procedure is very laborious and This new law emphasizes that everybody may
time-consuming, but of course this practice is in change his or her decision at every moment. It is not
conflict with the legal situation. In addition, it must clear if a demented person is allowed to change an
be considered that the usual legal procedure to ap- advance directive, even when he or she is partially
point a legal representative needs a comprehensive competent. (For example, aphasia and apraxia which
assessment and a lot of work done by the courts. If all are common among dementia sufferers might pre-
demented patients who are not able to make compe- vent that a dementia patient changes his advance
tent decisions should receive a legal representative, directive.)
the number of courts in Austria might be to low to
manage all this work.
The methods applied for the assessment of com- 5 Testamentary capacity
petence depend on the experts performing this as-
sessment. The judges often ask psychiatrists or neu- In Austria, testamentary capacity is not automati-
rologists to make their assessment of competence, cally withdrawn once a guardianship measure is pro-
but sometimes other medical doctors (e.g. primary nounced. The decision upon a person’s testamentary
care physicians) are asked. Insurances and social capacity is a decision to be made by a court of law.
services needing an assessment of competence for
deciding if somebody qualifies for financial support
often ask primary care physicians or specialists in 6 Consent to diagnosis and treatment
internal medicine to perform this assessment. Fre-
quently, these medical specialists are not sufficiently Austria recognizes the requirement of informed con-
experienced concerning diagnosis or assessment of sent, through official statements of national medical
dementia. Often, this results in judgments or recom- associations or in codes of medical ethics. Having a
mendations which very surprising for experts in psy- dementing illness is not an indication of impaired
chiatry and neurology. decision-making capacity per se. Especially in the
earliest stages of dementia, patients with dementia
remain capable of making a wide variety of deci-
4 Advance directives sions. However, the patients’ cognitive capacity has
to be closely monitored at baseline, and at follow-up
Since June 2006 a new Austrian law governs advance assessments. In the case of emergency treatment, it
directives concerning medical treatment. Now, per- is the doctor’s duty to take the necessary course of
sons can fix in advance which kind of treatment they action. Wishes expressed in an advance directive
do not want to receive (in the case of impaired com- should be taken into account. In the case of routine
petence). For making a legally binding directive, a medical care or treatment, the doctor must obtain in-
comprehensive education by a medical doctor and a formed consent. If a patient suffering from dementia
consultation by a lawyer are required. If the advance is not able to provide informed consent, the legal rep-
directive fulfils all requirements the medical staff resentative has to decide on his behalf based on the
must accept the patient’s decision. An advance di- will, actual or presumed, of the patient. For patients
rective is effective for a maximum of five years. The in an advanced stage of the disease or at the end of
104
Practice of competence assessment in dementia: Austria
life due to another disorder or illness, the wishes with a legal representative brings a variety of problems for
regard to the relentless pursuit of treatment should research among dementia patients. For example, an
be respected. informed consent signed by the patient or a legal rep-
resentative is required (by some Ethics Committees)
even for research among dementia caregivers. Thus,
7 Giving consent for research studies investigating caregiver’s burden and perform-
ing a simple assessment of the patient by means of
The new European legislation on good clinical prac- the MMSE are allowed only among dementia patients
tice in the conduct of clinical trials on drugs has been who are able to make a competent decision or who
implemented in 2004. The new legislation does not have a legal representative. This leads to a sampling
differentiate between patients who are incompetent bias. Of course, in research on human subjects, con-
because of a psychiatric illness or dementia and pa- siderations related to the well-being of the patient
tients who are incapacitated owing to an emergency should take precedence over the interests of science
situation. All those patients may be enrolled in a clin- and society. But, the collection of representative data
ical trial only after informed consent has been grant- necessary for planning appropriate services for de-
ed by a legal representative. Thus, in clinical trials for mented persons is prevented by this rigorous protec-
persons suffering from dementia the same laws are tion of the individual patient.
applied as for all other persons who have a (partially) The number of dementia sufferers in Austria
impaired ability to make their own decisions. will increase within the next five decades from about
There is a big concern, that patients suffering 90.000 to more than 230.000 patients. These rising
from dementia may not be included in clinical trials, numbers are similar in many other European coun-
and future therapies will not be scientifically evalu- tries. Considering this marked increase, the develop-
ated anymore. ment of rules are urgently needed which sufficiently
As in all other European countries, the law re- protect the patient and allow the investigation of es-
quires that everybody participating in clinical re- sential research questions.
search gives his written consent after having com-
prehensively been informed about the purposes, the
advantages and risks of this research. Patients suf- 8 Driving licence
fering from dementia at an early stage may be able
to understand the diagnosis and take an active role There is no obligatory health check for the elderly
in decisions affecting their lives. For that reason, pa- subjects with memory impairment to keep their reg-
tients with dementia can also consent in take part in ular driving licences. As dementia progresses, cog-
research, especially in clinical trials. nitive impairment may seriously effect on memory,
The form which has to be signed by the patient visuo-spatial abilities and perception. Due to the doc-
has to be approved by Ethics Committees. The work tor-patient confidentiality, general practitioners as
of the Ethics Committees is based on the “Ethical well as specialists are not obliged to disclose diagno-
Principles for Medical Research Involving Human sis showing conditions interfering with driving to the
Subjects” as given in the Declaration of Helsinki of the authorities unless there is sufficient reason that the
World Medical Association. Of course, Ethics Com- patient will actually endanger other persons. When-
mittees require an informed consent signed by the ever patients suffering from dementia refuse to stop
patient or a legal representative for research among driving even though they have been assessed as be-
dementia sufferers. ing unsafe, there are no straightforward solutions;
Considering that many dementia patients who the best action to take will depend on the individual
are not able to make a competent decision do not have involved.
105
Chapter 12
PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: DENMARK
Dorthe Vennemose Buss and Gunhild Waldemar
1 Financial capacity 3 Advance directives – medical treatment
People over 18 years are allowed to make their own People over 18, who are not under personal guardian-
financial transactions unless they are under financial ship, can make a living will. A living will has to be reg-
receivership. Receivership is appointed by the court istered in a special register for living wills. The person
or made by an administrative decision to people with can refuse life-prolonging treatment, should he/she
lack of mental capacity due to a health problem (i.e., come in a terminal phase of a disease (unavoidably
brain diseases, brain injury, and development disor- dying). This statement is binding for the doctors.
ders). Before appointment of receivership the disease The person can also refuse life-prolonging treatment,
and the lack of capacity must be described in a medi- should he/she become incapable because of mental
cal certificate. illness, old age, accidents or heart failure. This state-
Financial contracts made by people under fi- ment will only be advisory for the doctors.
nancial receivership are invalid, only the receiver is
allowed to make financial dispositions. The court can
find financial contracts made by a person with lack 4 Advance directives – daily care
of mental capacity, who is not under receivership,
invalid. People can make a will with their wishes to the daily
People with financial capacity are allowed to care. The community has to take the wishes serious,
make a general power of attorney with decisions of if it is possible, when they plan the daily care for a
whom they want to take care of their finances in the person, who is incapable to corporate. There are no
future and how they have to do it. A general power of formal requirements to a daily care will and no reg-
attorney can be a notary’s document or attested by istration.
two witnesses.
5 Consent to medical treatment

2 Testamentary capacity
For people with incapacity in healthcare decisions
A valid will has to be attested by notaries publicus the nearest relative or a guardian can give informed
(normally a judge). Notaries publicus needs to make consent to treatment or refuse treatment. The doc-
certain that the person has testamentary capacity. In tor makes the assessment about capacity. The patient
case of incapacity the will is refused. It is the judge, must be informed and involved in the information to
who ultimately makes the assessments about capac- the extent that he can understand and that this would
ity or incapacity; there is no medical report involved. not cause injury. This involves taking into account
The court can find a will, made by a person with the person’s views if they are current and relevant.
mental incapacity, invalid.
Chapter 12: D.V. Buss and G. Waldemar
6 Consent to bio-medical research When a patient is diagnosed with dementia the

doctor must be aware of the question regarding driving
Bio-medical research has to be approved by a scien- and should possibly recommend that the patient stop
tific and ethical committee. For persons under per- driving.
sonal guardianship the guardian can give informed If the patient does not wish to stop driving and
consent to participation. For persons with incapac- the doctor, the family or the police find him unable to
ity in healthcare decisions without guardianship, drive, then the doctor or the police can refer him to a
the nearest relative and the general practitioner can consultative driving test.
give consent to participation. The person himself
must be informed and involved in the information
to the extent that he can understand and it is not 8 Personal guardianship
allowed to force him to participate. Participation in
In combination with a financial receivership a person
the bio-medical research has to be in the person’s
with mental incapacity can have a personal guardi-
interest.
anship as well. Guardianship is appointed by the
court or made by an administrative decision. Before
appointment of a guardianship the disease and the
7 Driving capacity lack of capacity are described in a medical certificate.
The person is still legally competent and allowed to
Before getting a driving licence and renewal of the li- make decisions about his personal affairs as long as
cence the person has to get a medical examination he can. The guardian will be there to help him and to
and a medical certificate at his general practitioner. take over when necessary. The guardian cannot make
For drivers over 70 years of age the general practition- decisions against the persons will.
er has to also be aware of the person’s mental health Using force in the personal area of persons with
in his examination. mental incapacity is only allowed if law regulates it.
108
Chapter 13
PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: FINLAND
Raimo Sulkava
1 Introduction his/her will when the degree of dementia is mild cor-

responding the MMSE score 18–20 or over in Alzhei-
Legal competence is not similar in different types mer’s disease. In these cases it is very important that
of dementia. In Finland most patients with memory there are two impartial witnesses to the will who have
problems are properly diagnosed using techniques known the person for a long time. There is a decision
including brain imaging, mainly with magnetic res- of the Finnish Supreme Court where the last will of a
onance imaging (MRI). Thus we know what kind of demented person with moderate dementia was not
process is going on in the brain and what are the accepted because he was doomed to be incompetent
patient’s probable clinical and neuropsychological to express his independent stable will.
features as well as what the prognosis of the disease In Finland a guardianship can be sought from the
is. Mini Mental State Examination (MMSE) is used in local register office for one special financial transac-
all patients, the Consortium to Establish a Registry tion, either for a certain time period or permanently.
for Alzheimer’s Disease (CERAD) neuropsychological The legal guardian helps the demented person and pro-
battery sometimes and a broad neuropsychological tects him/her from financial abuse. However, although
battery only in problematic patients. the legal guardian is appointed the demented person
A dissertation in Finnish with an English sum- is not legally incompetent unless the court has in such
mary (Legal status of a person with dementia) was way decided which is quite rare. In most patients with
published as a book in the year 2003 (Mäki-Petäjä- dementia seeking a legal guardian is not necessary, if
Leinonen, 2003). According to the study the legal the patient’s financial interests are not endangered.
system of Finland is transforming towards acknow- If the content of the will is very clear and simple
ledging greater value of fulfillment of the right to self- and the person’s intent is longstanding and stable,
determination as previously. A person with dementia the will can be drawn up even at the moderate stage
is capable of deciding his/her matters whether the of dementia. In all cases of bigger financial transac-
matters regard his/her person or property. Only after tions a temporary legal guardian is recommended to
it has been proven that this is not the case does the prevent the possible court trials.
principle of protection becomes determining. The deal can be cancelled in court if the person
is incapable of understanding its meaning and conse-
quences. In some cases a patient with severe demen-
2 Testamentary and financial capacity tia has contracted a marriage. These are cases where
the demented person has lived with his/her future
In Finland a dementia disorder does not necessari- spouse for a long time. In Finland certain financial
ly abolish your testamentary and financial rights. and legal matters proceed more smoothly if the car-
However, the demented patient must understand egiver is married with the patient.
the meaning and consequences of financial and legal The biggest problems are seen in moderate cases
matters. Usually the demented patient can draw up of dementia. In the trial courts the decisions can be
Chapter 13: R. Sulkava
different even in identical cases. In most cases of mild patient and the closest relative or the legal guardian
dementia the patients are truly legally competent, but are informed and the permission is obtained from
some patients with mild Alzheimer’s disease are eas- them. If the patient cannot express his/her will any
ily persuaded to handle financial affairs or wills that more or is incompetent to understand the offered
are not according to their true will and it is not easy treatment option, the physician hears the relatives’
to repeal these in court. opinion. Then the physician makes the decision in
the best interest of the patient. However, if the de-
mented person’s opinion when he/she was healthy is
3 Advance directive known this should be respected.
The need for residential care may compromise
Advance directives (living wills) are widely recom- the demented person’s autonomy. The decision to
mended for all people in Finland. The content of take the demented patient to residential care is quite
the living will is usually the prohibition of unneces- often done against his/her will. Sometimes the de-
sary prolongation of life, e.g., by artificial ventilation mented patient does not understand the risks of liv-
or treatment in intensive care unit, when there is no ing alone. Furthermore, if living with a caregiver, the
hope for improvement. However, only a small frac- patient does not always understands the burden that
tion of people have written their advance directives. he/she is causing. Usually the physician and the clos-
In case of demented patients, the advance directives est relative/legal guardian make the decision by com-
are very seldom useful because they almost never mon consent. The patient’s opinion is heard, but it is
have access to intensive care. However, when an ad- not always respected.
vance directive is available it is a legally competent If a demented patient is involved in research, a
document and its orders should be respected. written, informed consent is obtained both from the
Nowadays there are also so-called positive liv- patient and the closest relative or legal guardian. All
ing wills. These are written documents how a per- research conducted on demented patients in Finland
son should be cared when he/she is incompetent to must be approved by the Ethics committee.
express his/her opinion. This is usually the case in
advanced dementia. These documents can express
many items, e.g., how intensively you should investi- 5 Driving capacity
gated when new symptoms appear, what kind of food
and drinks you like, what is your favourite clothing, Alzheimer’s disease and other dementing disorders
what kind of music you like to hear etc. If the person- almost always lead to loss of safe driving. According
nel in institution pays attention to these things, the to Finnish laws and regulations, however, there are
quality of ones lasts years can be much better even some conditions when a person can keep his/her pri-
for patients suffering from dementia. vate driving license despite the diagnosis of a memo-
ry disorder. First, dementia must be mild (MMSE usu-
ally more than 20). Second, there is information from
4 Consent to treatment and research the relatives and friends that driving is safe and there
are no traffic offences because of dementia. Third,
The demented person’s autonomy to decide on his/ clinical examination by a physician (usually neurolo-
her treatment and care should be respected as long gist or geriatrician) is passed successfully. The ex-
as possible. At an early stage of the disease, when the amination includes the clock drawing test to reveal
patient understands the pros and cons of the treat- possible agnosia. A driving test on road or in traffic
ments, the permission is obtained only from the pa- laboratory is carried out in suspected cases. In cases
tient. Later and in case of any uncertainty both the of mild dementia, the driving license is granted only
110
Practice of competence assessment in dementia: Finland
for one year or even a shorter time. The professional tients who have health conditions which make driv-
driving license is always taken away if there is a cog- ing unsafe. Most physicians do not like the law but the
nitive disorder. If there are a clear impairment in ex- police have received several hundreds of reports and
ecutive functions, e.g. in frontotemporal dementias, the driving license is taken away from the reported
or a marked slowing of movements and thinking, the persons. The majority of cases have had a dementing
driving license is take away even in mild cases. Lack disorder.
of insight is also a reason to deny driving.
Even if the driving license is granted to the pa-
tient he/she is asked to report any deterioration in
Reference
symptoms and is advised no to drive alone, during
night or in bad conditions. Mäki-Petäjä-Leinonen A (2003) Dementoivan henkilön
Since the year 2004 it is mandatory according oikeudellinen asema (Legal status of a person with demen-
to the law for physicians to report to police those pa- tia). Dissertation, University of Helsinki
111
Chapter 14
PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: FRANCE
Marie Bouyssy, Emilie Legay, and Vincent Camus
1 Introduction 3 Informed consent
According to the French consensus statement on 3.1 Hospitalisation and institutionalisation

dementia of Alzheimer’s type at the severe stage,
“whatever the stage in the course of the disease, the According to the French deontological code, the pa-
patient is a unique individual who deserves respect tient’s will has to be always followed, and as much as
and attention, and therefore quality of care and ac- possible, his consent is systematically researched.
cess to care without discrimination because of age or The chart of hospitalisation (March 2, 2006) given
dependence”. It adds that the main goal of care and to each newly admitted inpatient, states that every-
management is to improve the quality of life of the one has free choice of the health care professional
patient and his or her family, by associating a project or of the health care setting, except for patients ad-
for life and a care plan, up to the end of life, with re- mitted in psychiatric settings without any consent.
spect to patients rights and wills. In that perspective, These psychiatric admissions are of two types: the
assessment of competence and mental capacity to “hospitalisation à la demande d’un tiers”, and the
consent is part of the comprehensive medical evalu- “hospitalisation d’office”. In the case of “hospitalisa-
ation. It takes various aspects with regard to both the tion à la demande d’un tiers”, admission is done on
decisions and situations it addresses, and the French the basis of an informant’s request and of two medi-
legal and regulatory environment. cal certificates. In the “hospitalisation d’office”, the
hospitalisation is done of the basis of a medical cer-
tificate and a decision of the civil authority (mayor
2 Testamentary capacity of the city or prefect) due to potential threat of dan-
gerous behaviour. In both cases, medical certificates
According to the French civil law, a lack of any insan- must describe as precisely as possible the symptoms
ity is required to establish a testament. Civil acts are of the mental disorder and their impact on the people
null in case of mental disease, but the notary is not ability to make their own decisions. These admission
expected to evaluate the mental state of his client. procedures are strictly limited to admission in psy-
The burden of proof of the insanity belongs to those chiatric wards, but are applicable neither for general
who act in annulling the testament. And the proof hospital admission, nor for nursing home admission.
can be established by any means; even the notary has The informed consent is requested for admission in
previously considered the client as “clear minded” nursing home. A lack of any clear objection to stay in
(article 901 du code civil). a hospital or nursing home can often be considered as
a consent or an assent (understood as an agreement
to participate based on an incomplete understand-
ing), even this concept of assent has no legal basis.
Chapter 14: M. Bouyssy, E. Legay, and V. Camus
3.2 Diagnosis and treatment information about his medical state, the therapeu-
tic possibilities, and their potential consequences.
Announcement of dementia diagnosis requires that a This law introduced the reference to a “confident
comprehensive assessment has been done, including referral” (personne de confiance). Patients are invit-
a full neuropsychological testing and a neuro-imag- ed, at their admission to the hospital, to designate
ing assessment. The bio-ethical law (article 16-3 de a person who will assist or represent them during
la loi de Bioéthique du 29.09.1994) emphasises the the hospitalisation, in case of their incapacity to ex-
necessity to obtain an informed consent before any press their will. The patient can designate parents,
therapeutic or exploratory act. The law on “patients caregivers or any person of his choice, whose advice
rights” (04.03.2002) states (article 1111-4) that this will be asked in case of incapacity. This advice will
obtaining of a free informed consent is mandatory have to be taken into consideration, in any decision
prior to any medical intervention, and that this con- making process.
sent can be withdrawn at any time. In case of lack of
consent, the care provider has to respect the patient’s
will, but has to use all appropriate means in order to 3.5 How is it decided, whether a formal
convince the patient to accept the needed cares. attorney (guardianship) is necessary?
In France, the age of consent is 18. From that age, eve-

3.3 Participation in research ryone has full legal capacity. The law protects the one
who is unable to manage his own affairs by himself
The “Loi Huriet” on biomedical research (20.12.1988) because of a blunting of his personal faculties. The
makes mandatory to obtain of a free informed con- law on “protection of incapable people” (3 janvier
sent prior to the inclusion in a research protocol. This 1968) aims to protect people whose mental illness
consent has to be written and can be withdrawn at or incapacity limits their ability to manage their per-
any time. For adult persons under legal guardianship, sonal affairs. It offers three different levels of guardi-
the participation to research is possible by obtaining anship. In the first, civil acts can be considered to be
the free informed consent from the guardian. But the null and void retrospectively if completed during a
acceptation by the patient will always be researched, period of mental incapacity (sauvegarde de justice).
and the participation will made impossible in case of In the second case, a designated guardian assists the
clear rejection by the patient. In demented patients citizen who keeps all his civil rights (curatelle). The
without any guardianship, consent from first degree third transfers to the guardian all legal issues, the citi-
relatives is always researched. zen loosing all his civil rights (tutelle). Every physician
has duty to assess any potential alteration in mental
capacity due to a medical condition, and to take any
3.4 How is informed consent managed in appropriate decision in order to get protection to the
people with dementia? patient. He has to take into account, as much as pos-
sible, the patient’s advice. The physician, the patient’s
The deontological code (code de déontologie) states family, or the patient can do himself the request of
that in some circumstances, in particular in case of protection to the court. The court, on the basis of a
severe illness, the patient can be maintained in the psychiatric expertise, judges the final decision on the
ignorance of his state in order to protected him. In modalities of the guardianship.
that case, informants have to be informed. Neverthe-
less, the law on “patients rights” (4 mars 2002) states
that the care provider has to give to each patient,
114
Practice of competence assessment in dementia: France
3.6 Does the procedure differ with regard to property and financial affairs, but people retain
informed consent for their own civil rights. The court can designate
any family member has guardian.
– Institutionalisation – La tutelle: According to this type of guardianship,
If the patient agrees, the guardian has only to the guardian represents the protected people in
be informed. In case the patient doesn’t agree, all civil acts. The patient is fully deprived of all
the legal consent of the guardian has to be ob- civil rights. The guardian can be any member
tained. of the family. This is the most frequent type of
– Diagnosis and treatment guardianship used to protect demented people.
The patient and the guardian have to obtain a
clear statement on the medical condition and
the needed medical acts. The law on “patient’s 3.8 Can a spouse or child decide for the
rights” (loi du 4 mars 2002) states that the con- patient without a formal assignation as
sent of the patients under guardianship has to be guardian concerning the following areas?
systematically researched, a long as the patient
is able to take part in decision-making and to The French Civil Code defines (article 219) that when
express his willing. In case of lack of guardian’s one patient in unable to express his consent, the
consent, the physician can deliver appropriate spouse can ask to the court the authorisation of rep-
cares if he knows that this lack of cares will have resenting the patient. In that case, the spouse repre-
severe consequences for the health condition of sents the patient for consent of hospitalisation, treat-
the protected adult. ment, and participation to research protocol. Spouse
– Participation in research or children can also be designated as “confident re-
The consent has to be obtained by both the ferral” in the sense of the law of “patients rights” (loi
patient if he is able to give a consent, and the du 4 mars 2002) during an hospitilization.
guardian.
4 Driving licence
3.7 Is it possible to arrange formal
guardianship only for certain areas of A new governmental project on driving security is
competence (e.g., finances, treatment…)? actually under discussion in France. It aims to im-
prove the early detection of medical contraindica-
The law of January 1968 on “protection of incapable tions to driving capacity. Driving capacity should as-
people” distinguishes 3 types of guardianship: sess visual acuity, alertness, and gait performances.
Driving capacity assessment should take place along
– La sauvegarde de justice: this temporary device the life span, prior to the initial delivery of the driv-
applies to protect people whose mental capaci- ing license, and during each systematic and standard
ties have been altered for a short period or for preventive medical evaluation (as made in working
waiting a final decision regarding the two other medical evaluation…). From the age of 75, a system-
types of guardianship regime. Acts done during atic evaluation should be done every two years, in or-
the period of mental incapacity can be consid- der to detect at risk patients, inform them, and try to
ered as null, but people get full exercise of their obtain their consent to revoke their driving license.
civil rights. At this time, practical modalities of this systematic
– La curatelle: In this case, an agreement of the evaluation are not clearly defined.
guardian is requested for some acts regarding
115
Chapter 14: M. Bouyssy, E. Legay, and V. Camus
5 Conclusions tinely use them but specific tools that could help to
conduct reliable clinical assessment of competence
The French legal framework offers several devices and mental capacity are still lacking. Developing
that help to ensure respect of rights and wills of pa- such tools is a current way of research in the field of
tients suffering from dementia. Care providers rou- psychosocial dimensions of dementia care.
116
Chapter 15
PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: GERMANY
Volker Lipp
1 General outline the general rule that an adult has full legal capacity.
The party invoking this exception in court has the
1.1 Introduction burden of proof. The court then hears a medical ex-
pert, usually a psychiatrist. The court deals with the
Persons suffering from dementia, like other persons question of incapacity only as a possible cause for
with intellectual disabilities, due to their human dig- the invalidity of the specific decision or transaction
nity as guaranteed within the German Constitution, at issue. It does not decide on the incapacity of the
are recognised as a person with the capability to person as such.
hold rights and obligations (“Rechtsfähigkeit”) from Anybody dealing with an adult, citizens as well
birth until death. The concept of human dignity also as physicians or public officials, can rely on this. On
includes the right to self-determination or personal the other hand, German law does not protect the
autonomy. Consequently, any restriction of one’s legal good faith in the capacity of the person one is deal-
capacity (the competence to exercise rights and to ing with. In certain cases, where a public official is
assume duties, “Handlungsfähigkeit”) has to be com- involved, it obliges the official to check the capacity
pensated by legal representation because this person of the parties (e.g., the notary when authenticating a
would otherwise be deprived of the chance to use his legal transaction or act, “notarielle Beurkundung”).
rights. This is accepted only for purely personal deci- This does not mean, however, that the official has
sions (e.g., to enter into a marriage) which cannot be to assess the competence positively. It rather means
made by a representative on behalf of the person. For that the official has to look out for indications of in-
a detailed discussion see Lipp (2000). capacity.
Whereas these principles apply to all forms of
the so called “natural” legal incapacity, there are dif-
1.2 “Natural” incapacity ferent sets of rules for different forms of capacities,
namely for the transactional capacity on one side
In Germany, the age of majority is 18. At this age, eve- (“Geschäftsfähigkeit”), and for capacity to become
rybody gains full legal capacity. However, an adult, liable for a delict on the other (“Deliktsfähigkeit”).
due to his mental illness or disability, may not be able Moreover, additional rules can be found, or are dis-
to understand the meaning and consequences of a cussed, for special transactional capacities like tes-
transaction or to decide for himself. Decisions made tamentary capacity, capacity to marry or capacity to
by this person are then regarded as legally invalid consent to medical treatment. For the most recent
( for financial transactions see §§ 104, 105 BGB, i.e., in-depth analysis see Lipp (2000).
the German Civil Code). This so called “natural” legal
incapacity (as opposed to a declaration of incapac-
ity by a court which no longer exists under German
law) works as single-case orientated exception to
Chapter 15: V. Lipp
1.3 Legal assistance and representation guardianship and strongly promoted in order to avoid
(costly) court proceedings. It can be issued as long as
1.3.1 Legal Guardianship (“Betreuung”) the principal is not legally incapable to do so, and
maybe phrased generally, except in personal matters
Whereas the rules on “natural” legal incapacity can like medical treatment or institutionalisation where
be understood as minimum legal protection of men- it must explicitly state the powers of the agent. The
tally ill or handicapped adults, they do not provide document may be entered in a public register which
means for taking care of their affairs. Until 1991, the can only be inspected by the guardianship courts.
German system followed the traditional approach of In principle, there is no court supervision of the
legal incapacitation by court decree and the appoint- conduct of the agent except medical treatment with
ment of a legal guardian. The Guardianship Law of serious risks for health or life of the patient or insti-
1992 (“Betreuungsgesetz”) changed that completely. tutionalisation where the agent must obtain permis-
“Betreuung” is a new form of guardianship without sion of the court like a guardian (§§ 1904, 1906 BGB).
the precondition of an incapacitation of the adult, However, if there are indications for a misuse of the
tailored to the needs of the person for legal support power of attorney, the court will appoint a guardian
and representation. The court has to determine in to control the agent (§ 1896 sec. 3 BGB).
every single case the affairs for which the legal guard- At the moment, the law is quite uncertain to
ian (“Betreuer”) should be competent. The assess- whom an enduring power of attorney can be given
ment of the area of incompetence by the court must apart from family members and attorneys (see Ah-
be based on a diagnosis of mental illness or disability rens, 2005). As the law on legal consulting (“Rechts-
by a medical expert, but also on an evaluation if, and beratungsgesetz”) is about to be reformed, this may
where, support and representation by a legal guard- change soon. In any case, the main question for the
ian is necessary (§ 1896 BGB). The diagnosis of de- principal remains to find somebody whom he can
mentia alone, even if it severely impairs the capability trust to act according to his will even if there is little
to decide, will therefore not lead to the appointment control, or none.
of a legal guardian if the affairs of the adult can be
taken care of by other means, e.g., by social services
or family members. For a detailed discussion, see 2 Selected areas
Schwab (2004).
Legal capacity of the supported person can only Whereas the capacity to act in financial transactions
be restricted by an additional court order so that he is governed by the rules on general transactional ca-
will need the guardian’s consent for financial trans- pacity (“Geschäftsfähigkeit”) as described in the first
actions described in the order, if there is substantial section, there are some areas where additional or
danger for him arising from those transactions (§ even different rules apply.
1903 BGB: “Einwilligungsvorbehalt”). Legal capacity
in other fields, like consent to treatment, cannot be
restricted. An overview is given by Lipp (2003). 2.1 Testamentary capacity
The substantive rules on testamentary capacity of an

1.3.2 Enduring Power of Attorney adult (§ 2229 sec. 4 BGB) do not differ from the gen-
(“Vorsorgevollmacht”) eral rules. Since a will can be made by any adult in
writing, there is no obligatory assessment of mental
The power of attorney covering, inter alia, the case of competence. If the will, however, is made with the
incapability is an acknowledged alternative to legal help of a notary (§§ 10, 11, 28 Beurkundungsgesetz),
118
Practice of competence assessment in dementia: Germany
or other persons (emergency will, see §§ 2249 – 2251 2.4 Advance directives
BGB), these persons are obliged to assess the testa-
mentary capacity. As has been said above, this means Advance Directives for medical treatment have been
that they have to check for indications of incapacity. at the heart of the ongoing debate on end-of-life deci-
They do not decide whether the testator is incapable sions in Germany. They were recently acknowledged
but have to record their findings (§ 28 Beurkungsge- by the courts as legally binding directives provided
setz). they are applicable to the specific situation and the
patient was not legally incapable when issuing them.
Even if not required by law, they usually are in writ-
2.2 Consent to diagnosis and treatment ing. An advance directive remains valid until it is re-
voked or there is sufficient reason to believe that the
Apart from emergency cases, every medical inter- patient would have revoked it. The details have been
vention requires the consent of the patient. If the discussed elsewhere (Lipp, 2005).
patient is incapable to give consent because, due to
his mental illness or disability he cannot understand
the importance and consequences of the treatment, 2.5 Driving licence
or is not able to decide for himself (“Einwilligungsun-
fähigkeit”), his legal representative has to decide on There is no obligatory health check for the elderly to
his behalf. A legal guardian as well as an agent with keep their regular driving licences. A health check
an enduring power of attorney must decide accord- and an eye check every fifth year beginning with the
ing to the will, actual or presumed, of the patient. If age of 50 are required for persons with special driving
they intent to give consent to a medical treatment licences for lorries, buses and taxis (§ 48 sec. 5 Fahrer-
with serious risks for health or life of the patient, they laubnisverordnung). A physician, due to the doctor-
have to obtain the permission of the court (§ 1904 patient confidentiality, may not disclose his diagno-
BGB). Permission of the court is also required for a sis showing conditions interfering with driving to the
veto against life sustaining treatment which the doc- authorities unless there is sufficient reason that the
tor recommends (see Bundesgerichtshof [German patient will actually endanger other persons.
Supreme Court in Civil Matters], 2003 and 2005), and
for compulsory treatment of an institutionalised pa-
tient (§ 1906 BGB, see also Bundesgerichtshof, 2006). References
Ahrens M (2005) Autonomie in Fesseln – Vorsorgevollmacht

und Vorsorgeverhältnis an den Schranken des Rechtsbera-
2.3 Participation in research tungsgesetzes. Betreuungsrechtliche Praxis 14: 163–67
Bundesgerichtshof (2003) Beschluss vom 17. 3. 2003 – XII ZB
In principle, the rules on medical treatment also apply 2/03. Entscheidungen des Bundesgerichtshofs in Zivil-
to medical research. It is, however, debatable wheth- sachen 154: 205–30
er the guardian is able to give consent to medical re- Bundesgerichtshof (2005) Beschluss vom 8. 6. 2005 – XII ZB
search without direct benefit, or at least the chance 177/03. Entscheidungen des Bundesgerichtshofs in Zivil-
of it, for the patient who is incapable to give consent sachen 163: 195–01
Bundesgerichtshof (2006) Beschluss vom 1. 2. 2006 – XII ZB
himself. Apart from that, there is a wide range of leg-
236/05. Betreuungsrechtliche Praxis 15: 145–49
islation, often induced by the European Union, which Deutsch E, Spickhoff A (2003) Medizinrecht, 5th edn. Springer,
set up additional requirements (e.g., § 41 Arzneimit- Wien New York
telgesetz). For an overview see Deutsch and Spickhoff Lipp V (2000) Freiheit und Fürsorge. Der Mensch als Rechts-
(2003). person. Mohr Siebeck, Tübingen
119
Chapter 15: V. Lipp
Lipp, V (2005) Patientenverfügung und Lebensschutz. Zur Schwab D (2000) Kommentierung der §§ 1896–1921 BGB. In:
Diskussion um eine gesetzliche Regelung der „Sterbehilfe“. (Rebmann K, Säcker FJ, and Rixecker R, eds) Münchener
Universitätsverlag, Göttingen Kommentar zum Bürgerlichen Gesetzbuch Band 8: Fami-
Lipp, V (2003) Die neue Geschäftsfähigkeit Erwachsener. Zeit- lienrecht II, 4th ed. CH Beck, München, pp 1793–2172
schrift für das gesamte Familienrecht 2003: 721–29
120
Chapter 16
PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: GREECE
Magda Tsolaki and Eleni Tsantali
1 The legislative frame for dementia (4) There is not the minimum financial assistance
because of dementia but there is a retirement
Currently, dementia in Greece is unfortunately not because of aging.
even recognised as a type of disability. There is no legis-
lative frame, not even any mention of the term “de- As a consequence of the previous mentioned there is
mentia”. The legal system refers only to patients with a legislation gap furthermore in issues related to de-
psychiatric disorders and other categories of people mented patients as testamentary issues, research is-
who are not demented. In addition, psychiatric and sues in dementia, the right of patients to refuse drug
demented patients are confronted by the legislation of treatment and so on. Now the Greek Association of
legal guardianship. This law aims to keep the disability Alzheimer’s Disease and Related Disorders (GAADRD)
patients active and functional because of the respect considering the European legislation about demen-
of their personality. Close relatives need a lawyer in or- tia suggests a law frame in order to protect dementia
der to deposit the application form of legal guardian- patients, to secure their rights and to ensure a bet-
ship in Court and the closest relative will be proposed ter quality of life for them and their caregivers. The
as temporary and definitive legal guardian, although GAADRD managed recently the dementia people to
other relatives (not more than 3) will be proposed as get free their drugs.
members of the supervisory council. The legislation
anticipates similar self-appointed confrontation for 2 Competence in dementia
the patients who are alone or abandoned or who have
no relatives or other caregivers. However, there are al- But how one can decide that an elderly has demen-
ways judicial debates among the closest relatives for tia and about his/her competence? In Greece the as-
the financial resources management and especially in sessment of Alzheimer’s disease is made by memory
cases involving many children. The Greek government clinics in most of the cases being incorporated by the
does not give financial assistance specifically for de- departments of Neurological Clinics. The demen-
mentia people even that provided to people with spe- tia patients are accommodated in the same rooms
cific needs and the real situation is that: with patients of other neurological disorders and the
nurses are not trained for dementia. A patient com-
(1) The dementia is not recognised as a mental dis- plaining of memory disorders needs at least a couple
ability, need specific care and inter-scientific of months in order to visit a memory clinic after a an
management, appointment arranged.
(2) The dementia people are not placed among the During the first visit, the clinician follows the
specific need patients, international standard steps for the diagnosis of de-
(3) There is no solidarity assistance for the caregiv- mentia; such as clinical, neuropsychological, labora-
ers, or even permissions from their jobs in order tory and neuroimaging assessments. At least in the
to care for dementia people, urban areas this is done by interdisciplinary teams.
Chapter 16: M. Tsolaki and E. Tsantali
However, not all memory clinics use the same cog- logical analyses in the AD group generally confirmed
nitive battery for dementia although there exists a the conceptual domain assignments of the qualita-
large consensus regarding laboratory and neuroim- tive scores (Marson et al., 1999). In order to assess the
aging assessments. After the first assessment and the mental competence the clinicians frequently use the
diagnosis followed by drug care, the patient visits the scales of the Mini-Mental State Examination (MMSE)
memory clinic after 6 months for a follow up and per- (Folstein et al., 1975; Fountoulakis et al., 1999) and
haps for a more detailed assessment. for a more detail information the Alzheimer’s Disease
Competence in Greece means an ability for the Assessment Scale – Cognitive Subscale (ADAS-Cog)
patients to live on their own with a caregiver for su- (Rosen et al., 1984) or select subtests of cognitive bat-
pervising his/her dailies activities, arranging his/her teries in order to have a more detail assessment.
basic financial obligations, taking care of the person-
al needs of feeding, dressing, communicating, and 2.1.2 Functional competence
walking. The assessment of competence in dementia
although ought to be based on an objective frame, at A couple of scales frequently used in Greece for the as-
the same time depends on an individual frame as the sessment of the autonomy and functionality in every
age, the educational level, the socioeconomic level of day life are the Instrumental Activities of Daily Living
the patients (job, hobbies, family background, world (IADL) (Lawton and Brody, 1969), the Functional Rat-
view) and the general cultural level. Though there are ing Scale for Symptoms of Dementia (FRSSD) (Hutton,
some common accepted standards according to the 1990), the Alzheimer’s Disease Activities of Daily Living
welfare in the elderly these are limited to the autono- International Scale (ADL-IS) (Reisberg et al., 2001),
my in activities, the level of functionality, the ability the Blessed Dementia Rating Scale (BDRS) (Blessed
to communicate and the self-awareness of the sub- et al., 1968), and less the Disability Assessment for De-
ject about their own physical and mental health. mentia Scale (DAD) (Gélinas et al., 1999).
The health professionals of the European Pro-
gram “Help in home” can assess the functionality of
2.1 The assessment of competence (mental, elderly people at their home and offer primary care
functional, driving, financial) (medications, cooking, shopping, nursing, cleaning).
But this help is not merely a daily one as even a mod-
Perhaps neuropsychological assessment of dementia erately demented patient needs 24 hour attention
is the best measurement for mental competence as it from a caregiver. Family members and neighbours,
can provide reliable and objective measures of cogni- and in particular in rural areas, care for elderly de-
tive function and can be used as a supplementary tool mentia patients, by enhancing the quality of the time
for the diagnosis of dementia and the non-pharmaco- the patients live away from a nursing home.
logical treatment. Although this is also influenced by In Greece there are more problems for assessing
the level of education, age and the social background. the mental competence by the clinicians. The tools
commonly used worldwide have to first be translated
2.1.1 Mental competence and standardised for the Greek population in order
to have a common criterion of assessment with the
Mental competence is presupposed for complex cog- other European countries.
nitive activities including financial management,
driving and self autonomy. Errors in the executive do- 2.1.3 Driving competence
main (loss of task, nonresponsive answers, and loss
of detachment) are key predictors of declining com- Another aspect of autonomy and using instruments is
petency performance by AD patients. Neuropsycho- driving which was found to be mildly impaired in prob-
122
Practice of competence assessment in dementia: Greece
able AD drivers at a severity of Clinical Dementia Rat- This can be measured by using tools such as the Fi-
ing (CDR) 0.5. But the autonomy of the patients cannot nancial Capacity Instrument tasks. Financial capacity
restrict the freedom and safety of other people since is already impaired in mild AD. In the first stages, fi-
AD drivers at a severity of CDR 1 cause significant traf- nancial incompetence means deficits in more com-
fic safety problem both from crashes and from driving plex financial abilities and impairment in most fi-
performance (Drachman, 2004). There are no finished nancial activities, although in moderate cases, severe
or pressed studies in Greece about the correlation impairment of all financial abilities and activities is
between the first perception and judgment disorders present. Unfortunately, hospitals don’t frequently use
and dementia which lead to accidents and injuries, a Financial Capacity Instrument task, and scrupulous
particularly as the disease progresses. Although the people can take advantage of demented patients as
degree of the patient’s competence in everyday activi- they accompany them to the bank, alleging to take
ties can be contacted by the caregivers and clinicians money on the patients’ behalf.
to regularly assess competence, we know from other Another aspect of competence in financial man-
researches that mild AD patients did not do as well agement is the creation of a testament. If the elderly
on-road driving tests, when given verbal directions people prepares a testament before becoming de-
for following a specific route. Like many other skills, mented, the testament is accepted. In other cases, the
driving ability declines slowly in the early stages of testament can be disputed by the heritors, frequently
Alzheimer’s, moreover, deciding when it’s time to give referring to dementia as a psychiatric disorder. In
up the car keys can be difficult for any elderly person this case, the testament has restricted validity if the
and his family (Drachman, 2004). There is an informal heritors brings an expert on dementia with them to
consensus of the clinician and the family members in court. Then the judicial dispute favours the rights of
order the AD patient to stop driving. A 65 old driver the heritors.
is obliged to do a review of his/her licence contained
ophthalmologic and pathological tests but not cogni-
tive ones. The private driving schools are mediated in 2.1.5 Personality competence and nursing homes
order to review the driving licence of elderly people.
The reliability of the previous mentioned examina- Other aspects of competence in dementia are the do-
tions is valid, only if someone accepts that there is an mains of language, executive dysfunction, affective
ethical background of the private driving schools. But dysfunction, and compensatory responses. Incompe-
what happens if someone does not accept this? tence in language means for a patient more miscom-
prehension, factual confusion, intrusions, incoherent
responses, non responsive answers, loss of the ability
2.1.4 Financial competence to perform and delgate tasks than the normal elderly
(Marson et al., 1999) The progressive loss of commu-
Except for driving ability, financial capacity (Marson nication skills accompanied by functional disability,
et al., 1999) represents an issue of great significance behavioural disorders and the lack of free time for
for AD patients and their families, and is a part of the family members lead to the placement of dementia
global management of a progressive illness in which patients into institutes, most notably in larger cities.
loss of capacity for instrumental tasks, such as driv- According to a recent study (Melki and Belos, 2003)
ing and handling finances, can be planned for in ad- about the institualization of elderly people in Greece
vance. Financial capacity means almost intact basic
monetary skills, financial conceptual knowledge, (1) 25% of institutionalized elderly people have no
cash transactions, checkbook management, bank children and no close relative (2d degree or no
statement management, and financial judgment. relative people).
123
Chapter 16: M. Tsolaki and E. Tsantali
(2) 62% of institutionalized elderly people are en- References

tered into nursing homes by their children. 35%
(1:3) are decided by their spouse (www.encepha- Blessed G, Tomlinson BE, Roth M (1968) Association between
los.gr). quantitative measures of dementing and senile change in
the cerebral grey matter of elderly subjects. Br J Psychiatry
114: 797–811
Drachman DA (2004) Safe driving: aging and Alzheimer’s dis-
2.1.6 Advance directives and end of life decisions ease (commentary). Neurology 63: 765
Feldman H, Sauter A, Donald A, Gèlinas I, Gauthier S, Torfs
When the disease progresses the caregivers receive K, Parys W, Mehnert A (2001) The disability assessment for
advice from the Greek Association of Alzheimer’s Dis- dementia scale: A 12-month study of functional ability in
ease and Related Disorders, other non-profit associa- mild to moderate severity Alzheimer’s disease. Alzheimer
tions about quality of life in elderly or private clini- Dis Assoc Disord 15: 89–95
Folstein MF, Folstein S, McHugh RR (1975) “Mini-Mental
cians about the future of their patient and then they
State”: a practical method for grading the cognitive state of
decide what to do. But there is no legislation frame- patients for the clinician. J Psychiatric Res 12: 189–98
work about painless death or euthanasia, even in non Fountoulakis KN, Tsolaki M, Iacovides A, Yesavage J, O’ Hara
reversible diseases. When a patient refuses treatment, R, Kazis A, Ierodiaconou CH (1999) The validation of the
there is cooperation between clinicians, especially short form of Geriatric Depression Scale in Greece. Aging
psychiatrists and psychologists, and the family in or- Clin Exp Res 11: 367–72
der to act in the patients best interests since he/she Gélinas I, Gauthier L, McIntyre M, Gauthier S (1999) Develop-
ment of a functional measure for persons with Alzheimer’s
can’t decide for himself/herself.
disease: the disability assessment for dementia. Am J Oc-
cup Ther 53: 471–81
Hutton TJ (1990) Alzheimer’s disease. In: (RE Rakel, ed) Conn’s
3 Conclusions Current Therapy. WB Saunders, Philadelphia, p 780
Lawton MP, Brody EM (1969) Assessment of older people: self
The Greek Association of Alzheimer’s Disease and Re- maintaining and instrumental activities of daily living. The
lated Disorders is now preparing a legislation frame- Gerontologist 9: 179–86
work in order to suggest it to the Greek government Marson DC, Annis SM, McInturff B, Bartolucci A, Harrell LE
(1999) Error behaviours associated with loss of competen-
for helping dementia patients and their families,
cy in Alzheimer’s disease. Neurology 53: 1983
protecting their human rights and ensuring their McIntyre MC (1994) Criterion-related and construct valida-
welfare during the progression of the disease. In the tion of the disability assessment for dementia scale. Thesis
12 years of its’ existence, it has created more than 25 submitted for an M.Sc. in Rehabilitation Science, School
branches throughout Greece, promoted information of Physical and Occupational Therapy, McGill University,
about dementia and especially Alzheimer’s disease, Montreal, Canada
and has advanced the assessment and the rehabili- Reisberg B, Ferris SH, de Leon MJ, Crook T (1988) The Glo-
bal Deterioration Scale (GDS). Psychopharmacol Bull 24:
tation in dementia by creating Day Care Centres in
661–63
many Greek cities. It is a non profit association and Reisberg B, Finkel S, Overall J et al. (2001) The Alzheimer’s dis-
its’ funds come from volunteers, companies and the ease activities of daily living international scale (ADL-IS).
Greek church. At the shown form it is organising an- Int Psychogeriatrics 13: 163–81
nual seminars for the health professionals and car- Rosen WG, Mohs RC, Davis KL (1984) A new rating scale for
egivers in order to help dementia people and their Alzheimer’s disease. Am J Psychiatry 141: 1356–64
families minimising their burden during the disease.
The counseling and help line services are also coop-
erating for this purpose.
124
Chapter 17
PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: IRELAND
Mairead Bartley and Desmond O’Neill
1 Introduction ly with geriatricians, old age psychiatrists and other

health and social care professionals).
There has been a significant growth in the number
of older persons living in Ireland. In 2002, there were
436,001 people aged 65 and over living in Ireland, 2 Current practice
just over 11% of the total population (Central Statis-
tics Office, 2002). It is expected that there will be ap- In Ireland there is no specific legislation to define pre-
proximately 840,000 people aged 65 and over in 2031, cisely what mental capacity exactly involves and how
more than twice as many as in 1996. In 1993, the Irish it can be assessed. There is some legislation dealing
government adopted The Years Ahead (Working Party with mental disorder, the Mental Health Act of 2001,
on Services for the Elderly, 1988) as an official policy and it is chiefly of importance as it recommends as-
on health and social care for older people, and has sessment of capacity on the basis of function rather
made significant commitments to the development than status, and therefore establishes an important
of specialist healthcare for older people (O’Neill and principle for the Irish health and legal systems.
O’Keefe, 2003). Other areas of law focus on specific situations
Although the majority of older people lead in- such as capacity to make a will or consent to a medi-
dependent lives, there is a significant minority that cal procedure. Capacity to make a will or to marry is
has impaired capacity, chiefly because of dementing often assessed retrospectively while capacity to con-
illness, and at some stage will require assessment of sent to medical procedures or engage in litigation
their capacity. The Irish government, spurred on by may have to be assessed either in the presence or in
(a) new mental health legislation in 2001 (Mental retrospect.
Health Act, 2001), (b) a report of its own advisory The somewhat outdated Ward of Court system
body on older people (National Council on Ageing and the newer Enduring Power of Attorney (EPA)
and Older People,1998) and (c) recommendations scheme require that legal competence be assessed
of the government working group on elder abuse in general, in the present and for the future (Law
(Working Group on Elder Abuse, 2002) has initiated Reform Commission (LRC), 2003). The purpose of
a process of reform of the law on older people which wardship is to essentially protect the interests of the
for the first time addresses the need to consider ca- ward (Mills, 2002). In order to be taken into wardship,
pacity in terms of the acquired cognitive deficits of a person must be declared to be “of unsound mind
the dementias. and incapable of managing his person or property”
As this reform of the laws relating to capacity is (LRC, 2003). The President of the High Court or Cir-
a work in progress, this paper outlines (i) the exist- cuit Court is established as the person’s legal guard-
ing practice for assessing capacity, (ii) current train- ian, so that any decision making in relation to that
ing norms, and (iii) the proposed changes of the Irish person must be made in conjunction with the court,
Law Reform Commission (which has consulted wide- having the individual’s welfare as its main concern.
Chapter 17: M. Bartley and D. O’Neill
The court will appoint a wardship committee (i.e., a Adults are presumed to have legal capacity un-
committed person or persons, rather than a commit- less the contrary is proved. The onus of proving that
tee in the conversational sense of the word) to man- an adult does not have legal capacity rests on the per-
age the day-to-day welfare of the individual involved son asserting this.
and even give consent to medical treatment on their Likewise, proving that an otherwise incapaci-
behalf. In cases where the treatment is regarded as tated person has had a “lucid interval” rests with the
serious the committee may ask the consent of the person asserting this, since there was a previously
court, however, what is regarded as “serious” remains assumed continuance of incapacity (LRC, 2003). The
undefined (Madden, 2002). Wardship is currently the capacity required by law relates to the decision in
only real option where a person is lacking in capacity, question, that is that it is issue specific. This means
but given the complete loss of civil rights involved is that there are different tests for capacity in relation to
relatively infrequently invoked. such decisions. These are mainly derived from com-
In cases involving someone who is expected to mon law. A decision on legal capacity in relation to
lose capacity over a period of time, as in dementia, one issue does not necessarily mean that the same
the patients can confer “Enduring Power of Attorney” decision will be given in relation to a different issue.
(EPA) on someone who can then make decisions on There is a remarkable shortage of published in-
their behalf. Under the Power of Attorney Act 1996 the formation about the criteria for assessing whether
appointed attorney may have power over the prop- someone is mentally capable of managing and ad-
erty, financial and business affairs and personal care ministering his or her property and affairs. In partic-
(but not health care) decisions of the donor if the per- ular, the assessment of capacity is not defined in ei-
son becomes or is becoming mentally incapacitated ther the Irish biomedical literature or the guidelines
(Power of Attorney Act, 1996). For people who have of the regulatory body for Irish doctors, the Medical
the foresight to put an enduring power of attorney Council. The Medical Council’s guidelines (Medical
in place, the most significant advantage is that they Council, 2004) on ethics provide some general but
have chosen their own substitute decision maker undefined directions on capacity. In the first instance
should they ever need one (LRC, 2003). A downside they remind doctors that “disability does not mean
is the lack of a systemic oversight by the state of the lack of capacity” and secondly that most patients
administration of EPA’s. with psychiatric illness have capacity to consent. It
A number of different words and phrases are also advises doctors that, in the event of refusal of
used to describe people who do not have legal capac- treatment, an “assessment of capacity should be car-
ity. People are variously described in Irish or other ried out by a medical professional, in conjunction
legislation as being incompetent, mentally incapable, with a senior colleague”. The assumption underlying
mentally disordered, dependent, and of unsound mind this lack of clear guidance on the methods of capacity
(LRC, 2003). Recent Irish Mental Health legislation is that the doctor’s assessment aspires to the highest
recognises various categories of “mental disorder” standard of practice and behaviour, i.e., in line with
including intellectual disability, but this is concerned international best practice.
with people who may benefit from psychiatric care The British Medical Association has published a
and not with legal capacity. Nevertheless, mental “Consent Tool Kit” to assist healthcare professionals
disorder as defined under the mental health legisla- in dealing with consent issues and incapacity (Brit-
tion may be an indicator of lack of legal capacity. The ish Medical Association, 2003). This states that to
Enduring Power of Attorney legislation uses the term demonstrate capacity individuals should be able to:
“mental incapacity”. The Criminal Law Insanity Bill (1) understand in simple language what the medical
2002 deals with unfitness to plead, which may be re- treatment is, its purpose and nature and why it is be-
garded as a form of lack of legal capacity. ing proposed (2) understand its principal benefits,
126
Practice of competence assessment in dementia: Ireland
risks and alternatives; (3) understand in broad terms – the decision on general legal capacity should be
what will be the consequences of not receiving the made by a tribunal composed of a Judge as chair-
proposed treatment; and (4) retain the information man with appropriate medical and lay person-
for long enough to use it and weigh it in the balance nel, and with an appeal to the Circuit Court, and
in order to arrive at a decision. further appeal to the High Court, they should
Overall, wide discretion appears to be allowed, conduct an inquiry into the person’s capacity on
with little by way of the specification of the training a non adversarial basis;
of the physician who undertakes the assessment, or – there should be guidelines available to people
indeed of the framework within which it might oc- who are assessing capacity to ensure that the
cur (i.e., enabling) or the type of supports or tests in- assessment is a genuine objective assessment
volved. However, the leading legal commentator on of capacity and is not affected by issues such as
law and medicine in Ireland has strongly endorsed an literacy, conventional views of values or other ir-
enabling approach to capacity assessment (Madden, relevant matters;
2002). – there should be a detailed definition of general
legal incapacity, which includes mental disorder
broadly as defined in the Mental Health Act 2001
3 Current training and mental disability.
As the Irish higher training in geriatric medicine and These guidelines have been formulated with active
old age psychiatry closely parallels that in the UK, participation from geriatricians and old age psychia-
the training of trainees in each field is heavily influ- trists, and hopefully will form the basis for a humane
enced by practices in the UK. The BMA/Law Society and scientific approach to capacity assessment in the
book is widely used, and in general an approach is near future
emphasized which seeks to treat any remediable im-
pediments which might impair understanding, alle-
References
viate sensory deficits, and facilitate communication
through assistance of a speech and language therapist British Medical Association (2003) Consent Tool Kit, 2nd edn.
or psychologist. A particularly helpful clinical scheme London
for the assessment of capacity has been advanced by Central Statistics Office (2002) Cork, Central Statistics Office,
Molloy (Molloy et al., 1999), and this approach is also www.cso.ie
used in training SpRs. Law Reform Commission (2003) Consultation paper on Law
and the Elderly (LRC CP-2003). Law Reform Commis-
sion, Dublin; http://www.lawreform.ie/files/Consultation%20
Paper%20on%20Law%20and%20the%20Elderly%203-06-
4 The (near?) future 03.pdf.
Law Reform Commission (2005) Consultation paper on vul-
To this end we rely on recommendations from the nerable adults and the law. (LRC CP 37-2005). Dublin, Law
Law Reform Commission (Law Reform Commission, Reform Commission; http://www.lawreform.ie/files/Consul
2005), who have adopted a functional rather than tation%20Paper%20on%20Capacity%20_final%20version_
status approach to capacity assessment. Provision- .pdf
Madden D (2002) Medicine, ethics and the law in Ireland. But-
ally, the Law Reform Commission recommends the
terworths, Dublin
following: Medical Council (2004) A guide to ethical conduct and behav-
iour, 6th edn. Medical Council, Dublin
– there should be a statutory presumption of ca- Mills S (2002) Clinical practice and the law. Butterworths,
pacity; Dublin
127
Chapter 17: M. Bartley and D. O’Neill
Molloy DW, Darzins P, Strang D (1999) Capacity to decide. New Oireachtas na hEireann (2001) Mental Health Act, 2001. The
Grange Press, Hamilton, Ontario Stationery Office, Dublin
National Council on Ageing and Older People (1998) The law Report of the Working Party on Services for the Elderly (1998)
and older people: A handbook for service providers. Na- The years ahead – a policy for the elderly. The Stationery
tional Council on Ageing and Older People, Dublin Office, Dublin
O’Neill D, O’Keefe S (2003) Health care for older people in Ire- Working Group on Elder Abuse (2002) Protecting our future.
land. J Am Geriatr Soc 51(9): 1280–86 Stationery Office, Dublin; http://www.dohc.ie/publications/
Oireachtas na hEireann (1996) Power of Attorney Act 1996, s 6. pdf/pof.pdf
The Stationery Office, Dublin
128
Chapter 18
PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: ITALY
Rosa Liperoti and Roberto Bernabei
1 Introduction source of frustration for patients and conflicts with

families (Snyder, 2005).
The diagnosis of dementia is associated with multi- In order to reduce the risk of injury for patients
ple and difficult ethical issues which involve patients, and other people, it may be necessary to require the
relatives, caregivers and health care providers. Indi- revocation of the driving license. The revocation pro-
vidual values, religion and culture may largely impact cedure is regulated in Italy by the article 130 of the
patients’ and physicians’ behavior in managing such “Nuovo Codice della Strada” (Revoca della patente di
ethical and legal aspects. guida). According to this norm, the Motorizzazione
In Italy, a central role is played by the general Civile (which is the government office in charge of
practitioner who may guide patients’ and families’ regulating driving licenses) may revoke the license af-
choices together with specialists involved in the care ter a medical assessment documenting that the per-
delivery process. Nonetheless, adequate knowledge son has no longer the physical and mental requisites
on the norms regulating legal and ethical issues in for driving. The license revocation is not possible
dementia is not systematically diffused among both before the medical assessment. A relative, a legal tu-
general practitioners and specialists and the integra- tor, a legal caretaker, a local court judge may formally
tion of these aspects in the whole process of care is express request of revocation to Motorizzazione Civ-
strongly solicited. ile. Physicians taking care of the patients may only
Main ethical and legal issues in dementia, which instruct relatives about the revocation procedure or
have been formally regulated in Italy, include the as- in alternative they may directly report to the local
sessment of driving competence and the assessment authority the need for license revocation. Following
of understanding and decision-making ability. a formal request of revocation, the Motorizzazione
Civile asks for a medical assessment of the patient by
the local health care agency. The medical assessment
2 Assessment of driving competence may include both physical and cognitive evaluation.
Based on the results of the medical assessment, the
Driving a car is a complex activity, which requires Motorizzazione Civile either accepts or rejects the
rapid reactions, ability to make judgements, memory revocation request.
of rules, absence of practical experience, hearing and Driving license may be also revoked by Motor-
vision impairment. Even in the early stages, dementia izzazione Civile through the periodic mandatory as-
may be associated with impairment of attention, of sessment of the physical and mental requisites. The
orientation, of visuo-spatial ability, which may make frequence of such mandatory assessments is every 10
driving dangerous for patients and other people years for persons within 50 years of age, every 5 years
(Adler et al., 2005). On the other hand driving is an for persons between 50 and 70 years of age, every 3
important psychological resource for most patients years for persons after 70 years of age.
with dementia. Prohibiting driving may represent a
Chapter 18: R. Liperoti and R. Bernabei
3 Assessment of understanding and decision- dicted person but needs to acquire judge’s consent
making ability for acts of extraordinary administration.
Inabilitation and interdiction procedures are
The assessment of understanding and decision- ruled by the “Codice di Procedura Civile” (Codice di
making ability is a crucial issue in the evaluation of Procedura Civile, Artt. 712–720). Both procedures may
patients with dementia. Indeed, an impaired ability be requested by relatives, a legal tutor, a legal caretaker
to understand and make wills may have a dramatic or a local court. The request needs to be directed to the
negative impact on patients’ interests. local Court and it must explicitly state the facts sup-
According to the Italian legal ordainment, the porting it. The judge in charge to sentence must exam-
ability to act, which implies the ability to understand ine the person gathering information from relatives,
and make decisions, is acquired naturally after the friends or medical expert consultation. The entire pro-
18th birthday and it lasts until death (Codice Civile, cedure requires usually long time to be completed. A
Artt. 414–432). Nonetheless, the ability to act may be temporary legal tutor may be nominated by the judge
limited or excluded through the procedures of ina- before the completion of procedure.
biltiation or interdiction.
The inabilitation leads to a condition of relative
inability. The inabilitated person is considered capa- References
ble of making acts of ordinary administration but he Adler G, Rottunda S, Dysken M (2005) The older driver with
or she needs to obtain the consent from a legal care- dementia: an updated literature review. J Safety Res 36(4):
taker or a judge to make acts of extraordinary admin- 399–407. Epub 2005
istration such as buying and selling goods or accept- Snyder CH (2005) Dementia and driving: autonomy versus
ing and refusing inheritage. safety. J Am Acad Nurse Pract 17(10): 393–402
The interdiction confers to the person a status Codice Civile. Libro I Delle persone e della famiglia; titolo XII
Della infermità di mente, dell’interdizione e della inabilita-
of total incapability to take care of his or her own in-
zione. Artt. 414–432
terests. The interdicted person loses the ability to act Codice di Procedura Civile. Libro IV Dei procedimenti speciali.
and therefore, he or she must be assisted by a legal Titolo II Dei procedimenti in materia di famiglia e di stato
tutor nominated by the local court judge. The tutor delle persone; Capo II Dell’interdizione e dell’inabilitazio-
must act in total respect of the interests of the interne. Artt. 712–720
130
Chapter 19
PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: THE NETHERLANDS
Marcel G.M. Olde Rikkert
1 Introduction 2 Competence in Dutch
As in other countries, questions with regard to deci- The Dutch wording for competence is “wilsbekwaam-
sion making in dementia in the Netherlands have to heid” or “beslisvaardigheid”. Both words refer to the
be solved within a medical, legal and ethical frame- ability to reach a reasonable judgement on one’s inter-
work. The legal framework is primarily built on four ests in a specific matter. This description is used in all
laws: the bill that regulates the patient-physician re- Dutch laws that say something on decision making
lationship in medical diagnosis and treatment, the competence. Competence to make a decision is often
bill that regulates admission into a psychiatric hospi- regarded as equal to the competence to give informed
tal against one’s will, the bill that regulates how medi- consent for a certain matter. Evaluation of decision
cal research should be carried out, and the special bill making competence therefore is often carried out
on guardianship for non-financial decision making. by assessing whether subjects meet the criteria for
None of these bills describes the way in which the proper informed consent. Consensus based, Dutch
competence to consent should be assessed, nor do medical and legal practice generally divides compe-
they give a framework or present preconditions for tence for informed consent in four levels:
such an assessment. However, these bills are the le-
gal background for the assessment of competency to (1) The ability to make a choice and to make this
consent.1 In the Dutch dementia guideline published choice known;
in 2005 (www.cbo.nl) recommendations have been (2) The understanding of the information connect-
made to assess competence based on scientific evi- ed to the decision to be made;
dence, on this legal background, on a guideline pub- (3) The ability to weigh this information, including
lished earlier on this topic by the Royal Dutch Medi- risks, burden and potential benefits of diagnos-
cal Society, and on consensus among leading experts tic and treatment options, and the possible alter-
in the field on how to assess competence in medical natives;
practice. Here we will briefly summarize these rec- (4) Being able to process this information ratio-
ommendations and thereby describe the current nally.
practice on the assessment of competence for medial
procedures, for participation in research, for driving, Additionally, it is felt that emotions, identity and
financial affairs (testaments) and advance directives. relationships may also determine competence to
consent to a certain level (Widdershoren and Bergh-
mans, 2002). Though widely accepted, objective as-
1 sessment of these domains is even more complex
In Dutch the three care related laws are: Wet op de Genees-
kundige Behandelovereenkomst (WGBO), de Wet Bijzon- and currently cannot be based on valid diagnostic
dere Opnames Psychiatrische Ziekenhuizen (BOPZ) en de instruments. Therefore, the questions of competence
Wet op het Mentorschap, respectively. to consent most often are referred to psychiatrists in
Chapter 19: M.G.M. Olde Rikkert
the Netherlands, who are accepted to be experts not as first line screening instrument, to get a rough
only with regard to cognition, but who also are able idea of memory function and other cognitive
to weigh will, emotion, mood, personhood and patho- functions. Other, more sophisticated tests may
logy within these mental domains. also be used for this purpose (e.g., Camcog, Can-
Furthermore, there is broad consensus on the tab, etc). Having judged a patient as incompe-
fact that competence depends on the context and tent, physicians still are obliged to inform these
the subject to be discussed, and that this ability may patients, adapted to their understanding, and
change over time, also within a short while. In prac- ask them orally for agreement with the treat-
tice however, repeated assessments for competence ment plan.
are only carried out very rarely. Legally, all physicians (3) At some places, but primarily in the context of
are allowed to judge whether their patients are capa- research, clinical vignettes may be used for the
ble to consent, and this only should be explicitly ques- assessment of competence (Vellinga et al., 2002).
tioned and investigated when behaviour gives rise to In general within the Netherlands, vignettes and
serious doubts on competence. Otherwise, patients specific assessment tools such as MacCat-T/R
are accepted to be competent. In general, it is accept- are accepted to be of use, but they are not re-
ed, as the dementia guideline also states that demen- placing clinical judgement, both because of lack
tia diagnosis does not equal incompetence. However, of experience and insufficient feasibility in busy
in clinical practice this is not always properly taken daily practice.
into account. Physicians do not all get formal train-
ing in assessment of competence, and therefore are
not all warned for common pitfalls in investigating 4 Competence for participation in research
competence with regard to medical or non-medical
decision making. In the Netherlands Medical experiments are subject
to the Act on Medical Research Involving Human
Subjects (WMO). This Act covers scientific research
3 Competence for medical decision making in which people are subjected to interventions or
have to follow established behavioural rules. The
Formally, dementia diagnosis is accepted to be of no WMO has been in force since 1 December 1999, but
or only limited value in the assessment of competence has been revised since March 2006 to take account of
to consent, and it is widely accepted that a valid as- the implementation of the EU Good Clinical Practice
sessment requires a specific investigation, which goes Directive (2001/20/EC). The website of the national
beyond diagnosis (Schmand et al., 1999). The Dutch institute (CCMO) that safeguards execution of the
dementia guideline mentions some possibilities: WMO (www.ccmo.nl) asks researchers (as one of the
many questions that have to be answered to acquires
(1) Unstructured clinical judgement by a medical ethical approval) whether they want to conduct re-
specialist. Usually the principle of “proportional- search with subjects incompetent to consent. How-
ism” is used in such a competence judgements. ever, this website does not tell how this competence
This means that as the impact of the decision in should be assessed. In research practice this lead to a
increasing, the criteria to judge a person as capa- wide heterogeneity in assessing competence, ranging
ble to consent become more and more strict. from no formal assessment to assessment with the
(2) Neuropsychological tests may be used as a tool Mac-CAT-Research tool (Olde Rikkert et al., 2005).
towards good judgement on competence, but The CCMO states that if a patient is considered
are accepted not to replace clinical judgement. incapable to consent, using the best methods avail-
The Mini Mental State Examination is often used able to judge capacity for a specific study, a represent-
132
Practice of competence assessment in dementia: The Netherlands
ative has to give informed consent. According to the 5 Competence for driving license
WMO this may be a legal representative, the partner,
parents, children, and brothers or sisters. However, Within the Netherlands, by ministerial traffic regula-
the WMO also does not give details how this so called tion the diagnosis of dementia still is judged equal to
third party should give informed consent. The as- incompetence to drive a car. Thus, driving licences
sessment of competence of the representative is also are retracted when the national institution (www.cbr.
not discussed, but still this may be a highly relevant nl) is notified of a dementia diagnosis by a physician,
issue. This leaves important questions to be solved, a family member or patient him- or herself. In prac-
for example because these third parties may have tice however, neither patients nor families are obliged
interests of their own in the study. Interests of rela- to mention their diagnosis to the driving license
tives can be related to information on their genetic agency, while physicians often feel restricted by the
status, but also to an interest in the development of Hippocrates oath, which also promises professional
a therapy for AD by means of the study. When rela- secrecy. In short, this presents an urgent dilemma,
tives of an incompetent person have more interests which often causes problems in clinical assessment
in the participation in research of their incompetent of patients in Dutch memory clinics. Patients are very
relative than the incapacitated relative him/herself, reluctant to give up driving privileges and often con-
it can be disputed whether these relatives are still sider their driving as being safe, while family mem-
the most adequate persons to give consent as a third bers do not dare to challenge this assertion and phy-
party. Are they still able to decide in the best interest sicians feel restricted in their ability to actively solve
of their relative, and are they themselves competent this problem. In case the driving licence agency is no-
to consent? Or do the interests they have disqualify tified of cognitive problems, without that its having
them as representatives who may give consent? And being formally stated as a diagnosis of dementia, the
if a nearest proxy is disabled, who next should con- formal testing of driving capacity, which currently is
sent on behalf of the incompetent adults, or should the gold standard test, will be performed. However,
patients be excluded from research participation in it is still highly arbitrary with whom this test is per-
such cases? formed and with whom it is not. Thus, the best test
In practice, the problematic assessment of com- of assessment of competence for driving currently is
petence for the decision on research participation, not adequately positioned.
and the risk of conflict of interest of proxies is often At the moment new regulations are prepared by
circumvented by the so called “double consent proce- the ministry of traffic, and it is hoped that some sort
dure”. In this procedure a proxy consents for research of formal driving test will be properly embedded in
participation and the research subject also gives the new procedure of assessment for competence for
written informed consent, or at least agrees verbally driving. Moreover, the communication on and inter-
(the so-called “assent”). This double consent or addi- pretation of dementia diagnosis, and other levels of
tion of the subject’s assent is relevant, because with cognitive decline, has to be updated towards current
decreasing competence, persons may become more state of the art in this specific area of dementia-re-
risk aversive (Verheggen et al., 1998). This also may lated research.
counterbalance proxies, who might have a preference
for participation in specific studies, because of other
than only best interest arguments. 6 Competence in financial decisions
Until very recently, lawyers, and sollicitors in the

Netherlands played a key role in assessment of com-
petence for financial decision making, such as writ-
133
Chapter 19: M.G.M. Olde Rikkert
ing a testimony, without a certain description or self declaration of competence has insufficient reli-
guideline on how this should be done. This gave rise ability and validity when it comes to important deci-
to many legal procedures, in which family members sion making.
disputed these implicitly made legal judgements. Though in foreign countries the idea may exist
From 2006 onwards however, there is a guideline for that most of the Dutch end of life decisions are based
professionals working in court or with relevant finan- on living wills (or declarations for euthanasia), this
cial responsibilities (inspired by the MacCAT-assess- is far from reality. Living wills are used in a minor-
ment tools for competence) which should be used ity of the cases in which end of life decisions have to
for the assessment of competence. Assessment of be made. Nevertheless, this also is an area of compe-
competence, when formally targeted, should now be tence assessment, which could still be arranged bet-
carried out by asking several questions with regard ter within the Netherlands.
to the decisions to be made. This really allows the as-
sessment as to whether a client is able to adequately
judge his or her interest in a certain case. Of course, 8 Conclusion
the guideline also suggests to ask for a medical expert
opinion when serious doubts arise on competence to Depending on the context of decision making, the as-
consent. sessment of competence within the Netherlands has
Altogether, this is an enormous step forward in to fulfil specific ethical and legal conditions, as de-
current practice of competence assessment. Now le- tailed in laws on medical research, treatment agree-
gal practice should focus on implementation, teach- ment and guardianship. However, so far there is only
ing and training according to this guideline. limited attention to clearly describing the procedures
of assessment of competence for the medical and
non-medical professionals, who are given the author-
7 Competence for declaring living wills ity to perform these assessments. Both in competence
assessment for diagnostic and treatment decisions,
Living wills are potentially having an important im- for driving licence, for participation in research, for
pact on future decision making, both in medical and financial decision making and for stating living wills,
non-medical decisions. Dutch law very strongly au- there is room for improvement in daily practice. Re-
thorizes the legal value of such wills when they are search is needed to develop procedures for compe-
written in a state of being able to adequately judge tence assessment that are both feasible, valid and fit
one’s own interests. However, here again it is not spec- for the specific area of decision making. Implemen-
ified how this competence should be assessed. Thus, tation of guidelines already available, and training
sharp problems may and sometimes do arise when professionals in these skills, should have high priority
later, after months or years of disease progression, on the agenda’s on quality improvement. Dutch pro-
a living will should be followed. Judging the compe- fessionals, patients and families have to be carefully
tence to declare a living will, at a time period months guided and trained in the assessment procedures of
or years ago, is very difficult and often impossible, re- competence to be able to sail safely between the Scyl-
sulting in living wills that may not be followed. Some la of avoiding that competence is assessed too often,
living wills themselves, of which many paper versions and the Charybdis of not assessing competence ad-
are available within the Netherlands, require that the equately, because both may result in decisions, from
patient does some explicit statements on his or her which the frail elderly subjects may suffer.
mental competence for decision making. However,
without an objective assessment of competence by
a professional with experience in this field, even this
134
Practice of competence assessment in dementia: The Netherlands
References Olde Rikkert MGM, Lauque S, Frolich L, Vellas B, Dekkers W

(2005) The practice of obtaining approval from medical
Widdershoven G, Berghmans R (2002) Wilsbekwaamheid in research ethics committees: a comparison within 12 Euro-
de ouderenzorg. Tijdschr Gerontol Geriatr 33: 201–06 pean countries for a descriptive study on acetylcholineste-
Schmand B, Gouwenberg B, Smit JH et al. (1999) Assessment rase inhibitors in Alzheimer’s dementia. Eur J Neurol 12:
of mental competency in community-dwelling elderly. 212–17
Alzheimer Dis Assoc Disord 12: 80–7 Verheggen FWSM, Nieman F, Jonkers R (1998) Determinants
Vellinga A, Smit JH, Leeuwen E van et al. (2002) De beoordeling of patient participation in clinical studies requiring in-
van wilsbekwaamheid bij ouderen met en zonder cognitie- formed consent: why patients enter a clinical trial. Patient
ve stoornissen: de vignetmethode nader bekeken. Tijdschr Educ Couns 35: 111–25
Gerontol Geriatr 33: 207–11
135
Chapter 20
PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: NORWAY
Knut Engedal and Øyvind Kirkevold
1 Competence and legal capacity In the PRA adult patients are given full autono-
my over the health care by giving the patient widely
In the discussion about legislation and dementia in rights to participation and information regarding
Europe, it seems there exist an agreement that the medical treatment and care (Chap. 3). “If an adult pa-
terms “competence” and “incompetence” should be tient is obviously incapable of safeguarding his or her
restricted to a person’s legal status, whereas physi- own interest due to physical or mental disorder, se-
cians should use terms like “capacity” and “incapac- nile dementia or mental retardation, both the patient
ity” when evaluating a person’s mental status (Post and his/her next of kin are entitled to information”
and Whitehouse, 1995). However, some authors pre- (Sect. 3.3). The health worker that gives the informa-
fer to use the terms “capacity” or “incapacity” for tion to the patient has a clear obligation to do what
legal status (Gove and Georges, 2001; Jones, 2001). is possible to make the person understand. In Sect.
Thus, “capacity” and “competence” are used as syno- 3.5 it is stated: “Information shall be adapted to the
nyms in legal terminology. In cases when a person is qualification of the individual recipient, such as age,
incompetent, most Western countries have legal pro- maturity, experience and cultural and linguistic back-
visions that allow for the appointment of a guardian ground. The information shall be provided in a con-
to handle an adult person’s welfare and financial in- siderate manner. As far as possible, health personnel
terests (Gove and Georges, 2001; Kapp, 2001). Apart shall ensure that the patient has understood the con-
from that, medical treatment, care or admission to tents and significance of the information.”
an institution without the patient’s consent is usually Health care may only be provided with the pa-
part of the mental health legislation. tient’s consent, unless legal authority exits or there
are other valid legal grounds for providing health
care without consent (Chap. 4). Valid legal grounds
2 Legislation in Norway are if the patients receive care under the Psychiatric
care legislation or if a patient is of full legal age and
In Norway, the patients’ rights have been a public legal capacity is not competent to give consent (Sec-
concern for several years. A white paper investigating tion 4.6).
the topic where published in 1992 (NOU 1992:8) and Section 4.6 in the PRA gives procedures for proxy
the Patients’ Rights Act (PRA) passed the Norwegian consent to health care of patients are obviously in-
parliament the 2 July 1992. The PRA gives patients capable to consent, but healthcare by proxy consent
right to emergency care, right to evaluation of his/her may not be provided if the patient objects thereto.
health condition and right to a re-evaluation. On the Since patients with dementia rarely are under
other side the municipalities (Act no. 66 of 19 Novem- psychiatric healthcare, the sentence “obviously inca-
ber 1982 relating to Municipal Health Services) and pable…due to…senile dementia” is the only possibil-
the hospitals (The specialist health care act 1999) are ity the healthcare system has to omit the person with
entitled to give necessary health care. dementia’s autonomy regarding medical treatment,
Chapter 20: K. Engedal and Ø. Kirkevold
care and placement in institution. There are no other related to “legal competence” (or “legal capacity”)
definitions of obviously incapable or criteria for be- to make decisions is complicated and needs an in-
ing in such a state. dividual assessment in each patient. These aspects
In Norway there is a Legal incapacity Act from are discussed in Norway among stakeholders, health
1898. This Act describes procedures to put a person personnel, policy makers and law smiths, but it is
under legal guardians. In Norway, persons are rarer far from implemented in the Norwegian legislation.
than seldom put under legal guardian due to demen- Some aspects are due to be implemented in the near
tia and this act has no practical implication when future.
judging a persons competence. Since 1990 issues related to dementia, such as
A revision of the PRA is expected to pass the par- how to carry out a diagnostic work-up, medical treat-
liament during the autumn 2006. In this revision it is ment and care, and how to evaluate driving capacity
suggested that under certain circumstances shall be have been focused in national programs in Norway.
possible to provide necessary healthcare even if a pa- As a result diagnostic tools and national guidelines
tient resist. It is no further definition of “incapable” in for diagnostic work-up, treatment and care have
this revision. been developed. Guidelines how to assess the driv-
ing capacity of a person with dementia has also been
suggested Methods and guidelines how to assess the
3 Assessment of competence competence of persons with dementia have not been
developed. Even though the diagnostic tools do not
In the legalisations in Western countries the princi- contain items that measure competence, several as-
ple of autonomy is strong. Autonomy is defined as pects of legal capacity can be evaluated by using the
the capacity to think, decide and act on the basis of diagnostic tools, following the principle outlined by
rational thought (Harrison, 1993; Hillan, 1993). It is Wilkinson (2001). Judgment of the competence or
an important question whether or not demented capacity of a person with dementia therefore, will be
individuals are capable of autonomous thought and done in several ways, depending on physicians’ and
actions. Harrison (1993) concludes that persons with nurses’ knowledge and experience about dementia.
dementia probably are capable of autonomous ac- In nursing homes where the prevalence of severely
tions in the early stages of the disease, but that they demented patients is extremely high doctors and
later on lose their autonomy. Wilkinson (2001) has set nurses have to deal with this question daily. Normally,
up three aspects that must be considered when judg- they will not use standardised methods in the judg-
ing the autonomy of persons with dementia. Firstly, a ment of competence, but relay on their experience
diagnosis of dementia does not automatically mean and diagnostic tools used, using Wilkinson’s three
a judgement of incapacity, as the person may still principles. The same is the case when a patient is re-
be able to make a range of decisions. Secondly, per- ferred to a specialised memory clinic at a university
sons with dementia are a heterogeneous group with hospital.
respect to cognitive capacity and decision-making Even though many doctors use a systematic
capacity. Thirdly, an individual’s level of understand- and individual approach to assess a person’s compe-
ing can vary according to the nature or complexity of tence, this is not always the case. To ensure that all
the decision to be taken. In addition it is important people with dementia are assessed adequately, im-
to consider the consequences of a decision. Low-risk provements must be done within several areas. It is
consequences can offset limits in capacities, where- a challenge to implement diagnostic tools and stand-
as high-risk consequences require a more stringent ards for evaluation to personnel at various levels of
assessment (Post and Whitehouse, 1995). How the health care, and to adjust the tools according to new
decline of functional capacity in different areas is knowledge. The diagnostic tools used for evaluation
138
Practice of competence assessment in dementia: Norway
of dementia explicitly and assessment of competence Jones RG (2001) The law and dementia – issues in England
implicitly have been improved the last fifteen years, and Wales. Aging Mental Health 5(4): 329–34
but there is a long way to go. Kapp MB (2001) Legal interventions for persons with demen-
tia in the USA: ethical, policy and practical aspects. Aging
Mental Health 5(4): 312–15
Post SG, Whitehouse PJ (1995) Fairhill guidelines on ethics of
References the care of people with Alzheimer’s disease: a clinical sum-
mary. Center for Biomedical Ethics, Case Western Reserve
Gove D, Georges J (2001) Perspectives on legalislation relating University and the Alzheimer’s Association. J Am Geriatr
to the rights and protection of people with dementia in Soc 43(12): 1423–29
Europe. Aging Mental Health 5(4): 316–21 Wilkinson H (2001) Empowerment and decision-making for
Harrison C (1993) Personhood, dementia and the integrity of a people with dementia: the use of legal interventions in
life. Canad J Aging 12(4): 428–40 Scotland. Aging Mental Health 5(4): 322–28
Hillan EM (1993) Nursing dementing elderly people: ethical is-
sues. J Adv Nurs 18(12): 1889–94
139
Chapter 21
PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: POLAND
Andrzej Kiejna, Joanna Rymaszewska, and Tomasz Hadryś
1 Introduction – The European Convention on Human Rights and

Dignity of Human Beings Regarding Applications
Based on expert opinion, it has to be stated that the
of Biology and Medicine.
English word “competency” does not have an unam-
biguous synonym in Polish. It can mean in the first The European Convention from 11th November 1996
sense, in legal terms – which is the ability to act in le- contains complex regulations of all the relevant med-
gal matters, and less commonly, in the second sense, ical and psychiatric issues, such as the principle of
it can pertain to „competence” and words derived free and informed consent and protection of persons
from this stem (Flisiak, 2003). In this article compe- incapable of expressing it.
tency should be understood in legal terms, since the The principles of medical law, similarly to the
wider meaning of the word cannot be exactly con- sources, do not have a normative character, but are
veyed in Polish. It could be said that it is a relatively contained in sources and serve as generalizations of
new concept, which only now is being researched and detailed norms. The most important principles asso-
defined (Morasiewicz, 2000). This new understand- ciated with psychiatric proceedings are:
ing of „competency” allows it to be understood inde-
pendently of the definition in legal terms (Da˛browski, – the principle of the patient’s good (salus aegroti
1998). According to Safjan the ability to express agree- suprema lex est) and its specific directives: equal
ment is not an expression of will in a strict sense, but access to medical health care services, appropri-
belongs to a different juridical category from the abil- ate medical care,
ity to act in legal matters (Safjan, 1998). Safjan states, – the principle of protecting a patient’s dignity, reg-
that the ability to express agreement does not lead to ulated in the Health Care Facilities Act – HCFA
actions having legal consequences, but is a “personal (the right to intimacy and the respect of dignity)
good” – the ability of autonomous decision making. and in the Physician’s Profession Act – PPA (the
The relations of individuals with society, includ- obligation of keeping patients’ medical informa-
ing the health service, is regulated in various legal tion confidential),
acts, in which various concepts connected with the – the principle of protecting a patient’s autonomy
word “competency” appear. by related detailed directives, such as a patient’s
Polish medical law, which also pertains to psy- right to express free and conscious consent and
chiatry, distinguishes between the sources and prin- the conditions under which medical interven-
ciples of law (Da˛browski et al., 2006). The most im- tion is to be carried out without a patient’s con-
portant categories of these sources are: sent (PPA).
– The Constitution of the Republic of Poland, The main constitutional regulations in medical and
– The Medical Ethical Code, which regulates al- psychiatric matters are cited in various paragraphs
most all the essential issues of medical law, such in the Constitution (1994), where is stated that “the
as patients’ rights and informed consent, inherent and inalienable dignity of any person shall
Chapter 21: A. Kiejna, J. Rymaszewska, and T. Hadryś
constitute a source of freedoms and rights of persons ceedings assessing whether the individual has lim-
and citizens. It shall be inviolable. The respect and ited competency (§ 15). According to Polish law, mi-
protection thereof shall be the obligation of public nors of less than 13 years of age and individuals who
authorities.” are totally incapacitated are not legally competent
(§ 12).
According to the Civil Code, the mere fact of
2 Capacity to enter into a contract, including having a psychiatric disease is not a sufficient condi-
financial affairs tion to state an individual is not legally competent,
incompetence only applies in cases where an individ-
According to Polish law, there are no so called natu- ual does not have control over his own actions. Not
ral incompetencies in legal terms caused by the mere every psychiatric disease is associated with such ef-
fact of having a psychiatric disease or mental disabil- fects. The effects depend on the nature and the acute-
ity. Competency as interpreted in the Polish legal sys- ness of a disease, as well as the individual symptoms
tem is understood as the ability to carry out actions observed in an individual. Hence, apart from the di-
in legal matters in one’s own name, i.e., to understand agnosis of a disease (or mental retardation or other
expressions of will and express one’s own will aimed psychiatric disorder), the opinion of an expert psy-
at creating, changing or dissolving legal relation- chiatrist is needed. This opinion should contain a de-
ships, in other words, the ability to independently tailed assessment of an individual’s ability to control
shape one’s legal position (obtain rights and assume his/her own actions, based on an in-depth analysis of
responsibilities). The ability to act in legal matters is the individual’s behaviour/actions, contact with oth-
regulated in detail by the Civil Code (1964). ers, e.g. family members and at work.
In the Civil Code personal rights, especially In criminal law there is a concept of an interme-
health, liberty, honour, freedom of conscience, sur- diate state, in which the competence (responsibility)
name or pseudonym, image, confidentiality of corre- of an individual may be said to be diminished to a sig-
spondence, protection of home and family, scientific, nificant degree, which may be used in sentencing. This
artistic, inventive and rationalizing activities are pro- concept does not appear in civil law (Radziwiłłowicz
tected, regardless of other legal provisions providing and Gil, 2004). Unambiguous categorization of an in-
such protection. Additionally any statement given by dividual’s competency to act in legal matters, includ-
a person, who for whatsoever reason was in a state ing testing, is often impossible.
excluding the possibility of conscious or free decision
making and expression of will, is invalid (Art. 82).
This pertains in particular to mental illness, mental 3 Capacity to enter into marriage
retardation or other, even temporary, disturbance of
mental functioning (Da˛browski et al., 2006). According to the Family and Protective Code (Art. 11)
Competency to act in legal matters may be full, an entirely incapacitated person cannot marry (§ 1).
limited or lacking. Adult individuals have full com- Because of the incapacitation each of spouses can
petency (§ 11) to act in legal matters (and thus not demand annulment of a marriage (§ 2). It isn’t pos-
all individuals have such competency, unlike legal re- sible to annul a marriage because of the incapaci-
sponsibility, which each individual possesses), as well tation if the incapacitation was overruled (§ 3). A
as all corporate bodies. Minors, who are at least 13 person touched with mental disorder or the mental
years of age, have limited competency to act in legal deficiency also cannot marry (Art. 12. § 1). For if the
matters, as well as individuals who are partially in- state of the health or the mind of this sort of person
capacitated and individuals who have been assigned isn’t threatening the marriage or the health of the
a temporary legal adviser by the courts during pro- future offspring and if this person wasn’t entirely in-
142
Practice of competence assessment in dementia: Poland
capacitated, the court can allow her to marry. Each amination also without his/her consent; if the person
of spouses can demand annulment of a marriage be- is a minor (under 18 years of age) or totally incapaci-
cause of mental illness or the mental deficiency of tated, the consent of his/her legal representative shall
one of spouses (§ 2). It is not possible, however, to an- not be required either…”. In turn, § 2 states that “the
nul a marriage because of the mental illness of one of necessity of conducting the examination referred to
spouses after this illness had receded (§ 3). in § l shall be ascertained by a psychiatrist or – if the
assistance of a psychiatrist is unavailable – by any
other physician. Prior to the examination the person
4 Advance directives and end of life decisions concerned or his/her legal representative shall be
informed of the reasons for being examined without
There are no legal acts regulating the possibility of consent”.
advance directive and end of life decisions. According to Art. 38 a person who, due to men-
tal illness or mental retardation, is incapable of self-
sufficiently satisfying his/her basic vital needs, has
5 Consent to treatment, hospital or nursing no possibility of obtaining care from others and
home admission needs continuous care and nursing services but does
not require hospital treatment, may be admitted to a
In Physician’s Profession Act there are the statements nursing home with his/her own or his/her legal rep-
that (Art. 32. § 1) a physician may conduct an exami- resentative’s consent.
nation or provide other medical services, with the If the person referred to in Art. 38 or that per-
exception of conditions stated within this Act, only son’s legal representative does not give consent to ad-
after obtaining a patient’s consent. Additionally (§ 2) mission to a nursing home, while lack of care poses a
in cases of minors or those incapable of expressing risk to that person’s life, a social welfare agency may
conscious consent, the consent of their legal repre- apply to the Guardianship Court appropriate to the
sentative is required. If a subject has no such repre- person’s place of residence and file a motion for his/
sentative or communication with him/her is impos- her admission to a nursing home without that per-
sible, consent is given by the Guardianship Court. son’s consent (Art. 39).
Additionally, examining or providing a patient The motion referred to in § l may also be filed
with any medical service without his/her prior con- by the head of a psychiatric hospital if a hospitalized
sent is allowed only when immediate medical atten- person is incapable of self-sufficiently satisfying his/
tion is required due to a patient’s medical condition, her basic vital needs, requires continuous care and
or when due to advanced age a patient is incapable nursing but does not require further treatment in
of expressing his/her will and contact with that pa- that hospital (§ 2).
tient’s legal or de facto representative is impossible If the person in need of referral to a nursing home,
(Art. 33. § 1). due to his/her mental state, is incapable of giving his
Finally, the concept of “competency assessment consent, the Guardianship Court shall adjudicate the
in dementia” may also apply to hospitalization in a referral of such a person to a nursing home (§ 3).
psychiatric ward without an individual’s agreement. All of these legal acts, including those directly
Article 21, § 1 of the Mental Health Act (1994) states related to medical care, fail to consider advanced age
that “a person whose behaviour indicates that, due to or individual conditions, e.g. dementia. The stand-
mental disorders, he/she may pose an imminent dan- ards regarding the treatment of individuals with de-
ger to his/her own life or life or health of others, or mentia are thus covered in the regulations regarding
a person incapable of satisfying his basic vital needs adults (above 18 years of age).
self-sufficiently, may be subjected to a psychiatric ex-
143
6 Testamentary capacity disorders must fulfil, in order to hold a driving li-

cense (DVLA, 1996). The responsibilities of doctors,
According to the Art. 944 of Civil Code to write out including psychiatrists, to inform patients about any
and to revoke the will can only person having the full restrictions on an individual due to his/her health are
active capacity. The will is invalid if it was written out also regulated. The American Psychiatric Association
in the state turning off conscious or free coming to has also introduced such regulations (Reifler, 1995).
the decision and the expression of will (Art. 945).
8 Competency assessment procedures

7 Driving and dementia
No official procedures or professional standards have
Polish driving licenses are normally granted for an been defined in order to assess legal competency.
unlimited period. None of the following criteria for assessing compe-
According to Art. 90 of the Highway Code the tency appearing in the literature – Roths competency
driving license receives person who got the medical to agree to medical intervention, Somerville’s theory
statement about the lack of health contraindications of emotional competence, Drane’s Risk Dependent
against driving and the psychological statement Competence – neither have been subject to wider
about the lack of psychological contraindications discussion nor have inspired clearly defined stand-
against driving provided it is required. Testing the ards for such procedures (Da˛browski, 1998). An as-
state of health and psychological predispositions for sessment of competency is based on an interview
steering vehicles is regulated by Art. 122. The medical and psychiatric examination given by a doctor or psy-
assessment is carried out in case of: chiatric specialist. The doctor’s decision depends to
some degree on this examination and his/her know-
(1) person applying for the driving license or the ledge and skills.
certificate to the qualifications, Questions regarding the choice of a psychiatric
(2) person applying for restoring the entitlement specialist are addressed in very general terms, do not
for driving withdrawn on account of the state of contain any strictly defined regulations regarding the
health, qualifications of a specialist and the form of an ex-
(3) driver directed by the body of the road control, amination to assess competency or mental capacity.
if: The creation of appropriate regulations on qualifica-
(a) participated in a road accident, in which tions and provision of training in the field of forensic
someone was killed or wounded, psychiatry and psychogeriatry need to be addressed
(b) drove in an intoxicated state, in the near future. The formation of the Polish Asso-
(4) driver directed with decision of county official in ciation of Geriatric Psychiatry and the Polish Asso-
cases of safety, such as for the state of health. ciation of Forensic Psychiatry in the last two years are
independent initiatives, which give reason for hope.
There are no legal regulations for physicians or social These organizations are aiming to create appropri-
care regarding cases in which an individual develops ate training programs for specialists in these areas,
a condition which negatively influences his/her abil- which may help to solve various problems in the field
ity to drive (Kloszewska and Kwiecińska, 1997). Regu- of legal medicine.
lations in place in various countries, e.g. the United
Kingdom (“An At a Glance Guide to the Current Medi-
cal Standards of Fitness to Drive”) clearly define the
criteria that individuals with somatic and psychotic
144
Practice of competence assessment in dementia: Poland
9 Research and dementia Medical experiments can be carried out exclu-

sively after a positive opinion on the project has been
Regulations concerning conducting the research expressed by the independent bioethical committee.
studies in Poland are included in Physician’s Profes- Persons having high moral authority and high spe-
sion Act. cialist qualifications are to be appointed for the com-
The person which is supposed to be subjected to position of the committee (Art. 29. 1). The Bioethical
medical experiment is being informed of objectives, Committee expresses the opinion about the medical
methods and conditions of carrying out an experi- experiment, according to the resolution, and consid-
ment, expected healing or cognitive benefits, the risk ers ethical criteria and the appropriateness and the
and possibilities of withdrawing from the participa- feasibility of the project.
tion in experiment in every stage (Art. 24. 1).
Carrying out medical experiment requires the
written consent of the examined person being sup- References
posed to participate in it. If a person who cannot ex-
press his consent in a written form is to participate in Civil Code of April 29, 1964, 1994 Acts Register No. 84, pos.
the experiment it is possible to express the consent 386
Constitution of the Republic of Poland. Text passed on the 2nd
in an oral form in the presence of two witnesses what
of April 1997 during The National Assembly. Acts Register
should be conformed with witnesses’ signatures in
No. 78, pos. 483
the research documentation. (Art. 25. 1.). Da˛browski S (1998) The capacity for genuine voluntary com-
In the case of the entirely incapacitated person mitment in the mentally ill: selected aspects. Post Psychiatr
for the participation of this person in healing ex- Neurol 9 (Suppl 1): 11–18
periment a statutory representative of this person is Da˛browski S, Kiejna A, Rymaszewska J (2006) Legal report –
giving his consent. If such a person is able with the Poland. In: (Kallert TW and Torres-Gonzalez F, eds.) Leg-
insight to voice opinion in the matter of his/her par- islation on coercive mental health care in Europe. Legal
documents and comparative assessment of twelve Euro-
ticipation in healing experiment, moreover getting the
pean countries. Peter Lang, Frankfurt am Main, pp 219–
written assent of this person is necessary. In the case 47
of the person who has the full legal capacity but isn’t Flisiak J (2003) (Ed) The New Kosciuszko Foundation Diction-
able with the insight to voice opinion in the matter of ary. Universitas, Cracow
his participation in experiment, for the participation Kloszewska I, Kwiecińska E (1997) Motor vehicles driving by
of this person in healing experiment a guardianship people with mental disorders. Post Psychiatr Neurol 4:
Court is giving its assent appropriate on account of the 457–60
Medical Advisory Branch of the DVLA (1996) At a glance guide
residence of the subject carrying out an experiment.
to the current medical standards of fitness to drive. DVLA,
In case the legal representative refuses to ac- Swansea
cept the participation of the sick person in healing Mental Health Act (MHA) of August 19, 1994, Acts Register
experiment, it is possible to turn to the guardianship 1994, No. 111, pos. 535
Court appropriate on account of the residence of the Morasiewicz J (2000) The criteria for making decisions on be-
subject carrying out an experiment for its consent. half of the incompetent patient in Polish medical law. Post
With the application for giving the agreement on the Psychiatr Neurol 9 (Suppl 1): 95–100
Radziwiłłowicz P, Gil K (2004) Dilemmas in forensic opinion-
participation in medical experiment of this person, a
ing in inheritance issues. Psychiatr Prakt Ogólnolek 2: 63–
subject carrying out an experiment can appear to the
66
protective court appropriate on account of the resi- Reifler BV (1995) Position statement on the role of psychiatrist
dence of this subject. In cases requiring no delays and in assessing driving ability. Am J Psychiatry 152: 819
on account of the imminent danger to life, getting the Safjan M (1998) Law and medicine. Instytut Wymiaru
assent isn’t necessary. Sprawiedliwości, Oficyna Naukowa, Warsaw
145
Physician’s Profession Act of December 5, 1996, Acts Register Highway Code, Act of June 20, 1997. Acts Register 2002, No. 25,
1997, No. 28, pos. 152 pos. 253
Family and Protective Code. Act of February 25, 1964
146
Chapter 22
PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: PORTUGAL
Horácio Firmino, Pedro Silva Carvalho, and Joaquim Cerejeira
1 Introduction – the landlord has restricted rights to cancel rental

agreement when the house renter is more than
Elderly people and namely those who are diagnosed 65 years old;
with dementia have similar rights and duties com- – an elderly person can never be forced to live in a
pared with the others Portuguese citizens since their nursing home or similar facility; should this oc-
juridical capacity is not limited by age. However, one cur against his/her will it will be considered an
should attend to their reasoning status and ability of act susceptible of criminal procedure;
understanding and deciding. – all facilities with profitable purpose must have
Portuguese Constitution (the fundamental law their internal rules placed in a location with
to which other national laws are submitted) refers good visibility;
particularly to elderly on article 72 in the following – it must be celebrated a legal agreement of lodg-
terms: ing and caregiving between nursing home resi-
dent and the owner;
(1) Elderly people have the right to economic se- – all residents have right to intimacy and privacy.
curity and home, familiar and social support
conditions respecting their personal autonomy
avoiding and surpassing isolation or social mar- 2 Protection measures for elderly unable to
ginalization. defend their rights
(2) Policy for the elderly consists of economic, social
and cultural measures in order to allow oppor- Elderly people whose mental faculties and physical
tunities of personal fulfilment to elderly people, capacities are weakened by age or illness even show-
through an active participation in community ing incapacity of expressing their will must be pro-
life. tected.
The present Civil Code defines two protective re-
In relation to the rights of elderly people one should gimes for people handling with physical and/or men-
also remember some aspects of the Portuguese law: tal incapacities and who need support to decision
making. They are Interdiction and Inabilitation.
– descendents are obliged to give “food support” This restriction of rights must be required to juri-
to their ascendants, which means everything dical services (courts of law), usually by close relatives.
that is needed for nourishment, lodging and It should be object of assessment by a psychiatrist ( fo-
clothing; rensic psychiatric competence is not required) who,
– in case of incapacity of the elderly person, only after a judge questioning, makes an expert evaluation
one appointed legal tutor is responsible for rep- with description of examination and conclusions. The
resentation and management of his/her person defensive lawyer (elderly representative), the repub-
and property; lic prosecutor delegate (representative of the state)
Chapter 22: H. Firmino, P.S. Carvalho and J. Cerejeira
have the opportunity to formulate questions or state legal obligation to do so) to assess this capacity to
against the act. Finally, the judge in possession of the people older than 65 years and/or having some type
data of the assessment and considering all the raised of psychiatric disorder. After evaluation they declare
questions will pronounce for the capacity or incapac- under compromise of honour if the person has ca-
ity in the form of interdiction or inabilitation. pacity to have a reasonable awareness of the act.
Interdiction respects to the person who is on This request is being made to prevent claims
an usual incapacity condition of ruling him/herself or from prejudiced relatives or beneficiaries of the will
his/her patrimony due to a psychiatric disorder, deaf- (total or partially excluded from the acts) and cancel-
ness or blindness (Article 138 of Civil Code). To apply lation of the decisions by court appeal.
this measure it is necessary that a family member re- Although dementia is not specifically referred,
quires the interdiction and that a curator is appoint- subject must have understanding of the nature of the
ed by the family council. The curator becomes the act that is being made. Assessment usually explores
interdicted person’s representative and is responsible orientation, concrete and abstract reasoning, calcu-
of taking all the necessary measures respecting the lation. Subject is asked to explain what are the objec-
subject and patrimony administration. Interdiction tives of his presence in that place and finally to tell, by
affects only a very small number of elders and usually his words, what he pretends to do and if he is aware of
is applied to people with serious mental illness. the scope and extent of the decision.
Inabilitation is applied to patients with psychi-
atric disorder, deafness or blindness which, although
with permanent character, is not so serious as to jus- 4 Health program for elderly people
tify interdiction (Article 152 of Civil Code). Subjects
are assisted by a curator or a counsel (Article 153 of Government’s Program proposes integrated health
Civil Code) to help them when incapable of expressing policies in the health care national plan which pro-
a free informed consent, of taking care of themselves mote: development of actions closer to elderly citi-
or administrating their patrimony in consequence zens and dependent people; fostering, with adequate
of an illness, a disorder or any other weakness com- and reasonable territorial distribution, the possibility
promising their mental and physical capacities. It is of a more autonomous and better quality life; human-
a temporary protection measure specially conceived ization of healthcare; potentiation of local resources;
to avoid patrimony dilapidation. adjustment to diversity that characterizes individual
Should some worsening or improvement occur aging and lost of functionality.
in the subject’s state any of these measures may be It intends to assure an integrated practice of
modified, after request of the proper, of the family continuous healthcare, promoting the creation of
and/or the curator. proximity care services in the community and the
indispensable articulation among health centres,
hospitals, continuous healthcare facilities, palliative
3 Testamentary capacity healthcare facilities and social support institutions
and services.
The decision of making a will and/or donation or sell- So:
ing patrimony follows the general Portuguese law. In By the terms of item (g) of the article 199 of the
executing these acts, civil law notaries should evalu- Constitution, The Council of Ministers deliberates:
ate if testator has full understanding of the nature
and extent of the procedure. (1) Adopting the following fundamental principles
In recent years notaries and lawyers are request- as guidelines for construction of healthcare to
ing the expertise of two psychiatrists (even without elderly and dependent people:
148
Practice of competence assessment in dementia: Portugal
1.1. Respect for the dignity of the elderly or depend- tion in the matter of continuous and long term
ent human person, namely for the right to pri- healthcare.
vacy, identity, information and non discrimina-
tion;
1.2. Incitement of citizenship, translated into the ca- 5 Capacity for informed consent
pacity to participate in relationship and collec-
tive life; In every medical procedure it is necessary to obtain
1.3. Participation of elderly or dependent people, or patient’s and/or family’s consent. Based on general
their legal representative, in the elaboration of understandment of the Portuguese law one can as-
the healthcare plan and reference to other avail- sume that the search for medical consultation im-
able resources in the health service network; plies an authorization for an assessment consisting
1.4. Respect for the physical and moral integrity of in interrogation and physical exam. Complementary
elderly or dependent people, assuring their in- diagnostic exams are, in the same way, considered
formed consent, or their legal representative, to to be authorized except those which imply taking
procedures or healthcare; contrast and/or chemical substances. These exams
1.5. Family involvement in giving the main care, as a should only be done after an explanation of the pro-
privileged nucleus for the equilibrium and well- cedure and obtainance of a written consent.
being of elderly and dependent people; Prescription and administration of medication,
1.6. Promotion, recovery or continuous mainte- although is does not require written consent, should
nance of autonomy, which consists of healthcare be also appropriately explained to patients.
suitable for improving autonomy and well-being All surgical treatments and/or with instrumental
levels of the users; use equally warrant a written consent, obtained after
1.7. Proximity of care, in order to maintain relational detailed explanation of objectives, risks and benefits
and social support or promoting social insertion of the procedure.
of elderly or dependent people; In clinical studies no procedure can be taken
(2) Create, depending on the Minister of Health, without the essential written informed consent
a Commission for the Development of Health- signed by the patient who is going to participate in
care Services to Elderly and Dependent People, the study.
which will be settled by joint dispatch of Minis- The Portuguese law considers that if the patient
ter of Health and Minister of Labour and Social does not meet the necessary psychic conditions to
Security. The Commission will have the mission, understand the study, indications, risks and/or ben-
among other tasks, of proposing an action plan, efits, the signature can be replaced for a written au-
for future ministerial approval (Minister of State thorization of the family/care giver in the presence of
and Finances, Minister of Health, Minister of La- a third person not involved in the study nor the insti-
bour and Social Security), to predict progressive tution where it takes place. The same applies to cases
creation of communitarian and proximity serv- where the subject cannot read and/or sign.
ices all over the country. This can be achieved
through partnerships promoted by primary
healthcare centres with local social solidarity in- 6 Law and driving motorized vehicles
stitutions and autarchies, and articulation of pri-
mary healthcare centres, hospitals, continuous European directive (2000/56/CE) was transposed to
or long term healthcare centres and palliative Decree-Law no. 45/2005 of February 23 which states
and pain healthcare centres. A proposal should the following:
be formulated for reviewing existent legisla-
149
Chapter 22: H. Firmino, P.S. Carvalho and J. Cerejeira
– Validation of ability for driving depends on age; References

– Shorter revalidation intervals may be justified
for medical or psychological reasons. Carvalho PS, Pinho A (2006) Legislação e programas de apoio
para o idoso, in psicogeriatria. Ed. Horácio Firmino, Psiq-
uiatria Clínica, pp 201–13
Moreover, Decree-Law no. 209/1998 of June 15, in Ar-
Dias M, Carlos D (2003) Consentimento informado. Ed. For-
ticle 12 says:
masau, Coimbra, pp 7–13; pp 21–25; pp 41–54
Medical professionals who, in the course of their Oliveira G (1999) Temas de direito da medicina. Coimbra Edi-
clinical activity, treat drivers with illness or handicap, tora
chronic or progressive, or identify psychiatric disor- Oliveira G (2002) Direito da medicina – I. Coimbra Editora
ders which may affect the security of driving should Parente P, Queirós P, Firmino F, Gomes C (1998) Ética nos
advise them to request a special inspection to the lo- Cuidados de Saúde. Ed. Formasau, Coimbra, pp 9–25; pp
43–53
cal Health Authority and notify that authority with a
Pereira A (2004) O consentimento informado na relação médi-
sustained and confidential clinical report.
co-paciente: Estudos de direito civil. Coimbra Editora,
Although age neither restricts nor imposes the Coimbra
inability to drive, it is considered that, after 65 years Programa Operacional de Saúde – Século XXI; http://www.
of age, the individual should be submitted to shorter saudexxi.org/default.aspx
intervals assessments with evaluation of medical and Portal do Ministério da Justiça; http://www.tribunaisnet.mj.pt/
psychological capacities to drive. There is the pos- Portal de Direito (verbo Júridico); http://www.verbojuridico.net
sibility to impose limits to driving if it is recognized Portal do Ministério do Trabalho e da Solidariedade Social;
http://www.mts.gov.pt/index.php?corpo
some kind of disorder that may affect driver’s condi-
tion while the subject is referred to the local health
authority to be submitted to an assessment.
150
Chapter 23
PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: ROMANIA
Nicoleta Tătaru
The value of human being is not diminished by even profound forgetfulness

S. J. Post
1 Introduction tions where compulsive interventions are required

to safeguard the patients and/or those surrounding
By 2025, it is estimated that the number of persons him/her.
with dementia will increase to around 600.000 in
Romania (WHO). With the increasing prevalence of
dementia, issues of competency have become very 2 Mental capacity and competency
important. Issues of competence are fundamen-
tal to informed consent in research and the care Some of our patients, particularly older people with
of demented people. Society is equally interested dementia, may not be able effectively to represent
in maintaining the autonomy and well-being of its their interests, manage their affairs or agree what they
aging citizens as well as protecting them from risks are suggested. This is particularly problematic for
and dangers caused by their declining capacities. patients who are alone and where there is a conflict
Generally, Romania’s legislation is in keeping between individual and family or carers’ interests.
with principles set out by the World Health Organisa-
tion, United Nations and so on, concerning the pro-
tection of people with mental illnesses. The legisla- 2.1 Global competence
tion calls for adequate treatment and respect for the
human rights of the persons with mental disorders. The definitions of competency have been moving
The most important principles derived from these from a generalized concept of incompetence to a
documents are: respecting the human dignity, rec- more specific construct of incapacity to perform spe-
ognizing equal civil rights with the others persons, cific tasks needed to manage critical day-to-day func-
warranting the medical care and treatment and the tions, such as the capacity to manage funds and the
social, professional and familial rehabilitation. The capacity to make informed decisions about medical
legal rights, financial and other personal interests of treatment (Baker, 1998)
patients with mental disorders must be protected. Competency is a legal term, defined as having suf-
According to the Madrid Declaration art.4, the ficient capacity, ability, or authority. Mental capacity
psychiatrist should discuss with the family and, when is a functional term and means an individual’s capac-
appropriate, seek legal counsel in order to safeguard ity to make certain decisions and to perform certain
the human dignity and the legal rights of the patient acts and ability to understand the nature and effects
when he/she is unable to exercise proper judgement of one’s acts (Art. 5 of the Romanian Mental Health Law
due to mental disorder. All psychiatrists face situa- 2002). Mental capacity is evaluated by a medico-legal
Chapter 23: N. Tătaru
expert after the clinical psychiatric and psychological tions for dementia and age- related cognitive decline
examination. This expert decides if a person is com- include tests or assessments of a range of multiple
petent or incompetent as a result of a mental disease, cognitive domains, typically including memory, abili-
injury or developmental disorder. The incompetent ties, problem solving, and executive functions.
person cannot understand, appreciate and decide on
specific issues of one’s daily life.
2.2.1 Testamentary and financial capacity
Non-competency
Some people have cognitive impairment that may
When the patient is non-competent or partially non-
reduce their capacity to manage their own financial
competent the others should make the decisions on
affairs and to make a will. The legal decision to limit
his behalf. In this situation next approaches can be
a person’s right to manage his or her own finances
taken: the patient’s best interest, a proxy decision
depends, in part, on an assessment of financial com-
maker or an advance directive. We have to respect the
petence. Tribunals and courts may receive informa-
patient’s autonomy, and help the patient to preserve
tion from different sources ( family members, general
his/her relationship giving information and respect-
practitioner, psychologist, social worker, and psy-
ing the confidentiality.
chiatrist) and have to use this information in order
Art 948 of Romanian Civil Code gives the defini-
to make guardianship decisions. Kaplan and Sadock
tion of legal competence and its exigencies necessary
(1991) underlined the psychological abilities neces-
for a legal act: functional capacity, valid consent, mo-
sary to evaluate the testamentary competence. The
tivation and nature of object.
patient must know: the nature of their property that
they are making a will and who are their natural ben-
2.2 Specific competence eficiaries (Webber et al., 2002).
Testamentary capacity such as the competence

to create a will, contractual capacity -enter into a 2.2.2 Driving competence
contract, donative capacity – make a gift, driving
capacity, consent to diagnosis, treatment and research, There is an obligatory health check every fifth year for
advance directives, right to die, are often at issue in all persons. A health check every year beginning with
litigation involving the elderly. the age of 65 is required for the elderly to keep their
In Romania we do not have a standard assess- regular driving licences. In Romania the doctors have
ment to evaluate the status of a person’s financial to inform the police monthly about all new mentally
competence or other specific competencies. For glo- ill cases, choosing between to protect the public from
bal competence assessment we use the same clinical persons with mental disorders including dementia,
and psychological examination like for diagnosis of when in traffic, and the ethical obligation to respect
mentally ill elderly patients. One of the important the confidentiality.
goals of the neuropsychological evaluation of the el-
derly persons is to provide information regarding the
functional capabilities of geriatric patients in order to 2.2.3 Consent to diagnosis, treatment and
decide upon their ability to live alone, to drive a car, to research
manage their financial affairs, to have a valid consent
to care, treatment and research. Brief mental status The principle of autonomy emphasizes the importance
examinations are not adequate for diagnosis in most of patients having the right to decide on which
cases. Comprehensive neuropsychological evalua- treatment to choose and the right to refuse treatment
152
Practice of competence assessment in dementia: Romania
and research. The patient’s valid consent means that their right to self-determination. Thus for people with
he/she has to be: informed, competent and not-coerced. dementia, advance directives could be used to in-
Older adults with dementia may have diminished clude other general wishes (to attend a day care cen-
capacity to make medical treatment decisions and tre, to take part in research, living arrangements etc).
may not be legally competent to engage in informed For an advance directive to be valid, the person must
consent and surrogate consent is required. The have capacity. Advance directives are an important
professionals continually face the question of whether means of ensuring that a person can consent to or
a person with dementia is competent to refuse or refuse medical treatment or care, when they no long-
consent to nursing intervention and research. er have the capacity to do so. Advance directives for
In Romania every medical intervention requires medical care have been widely advocated as a means
the consent of the patient who has to sign a consent of extending the autonomy of patients to situations
form, apart from emergency cases and if the patients when they are incompetent (Fazel et al., 1999).
are incapable to have a valid consent due to their In Romania we have no instrument for the as-
mental disorders. For these patients their legal sessment of competency to complete advance direc-
representatives or a medical commission have to sign tives that seems to be reliable, valid, and ready to be
the consent. Consent to treatment is linked to human used in clinical practice.
dignity and personal liberty. The patients must have
the right to refuse the treatment when they believe
that their quality of life would be compromised by 3 Legal assistance and representation
continued treatment and they must have “the right
to die” with dignity. The patients are entitled to know 3.1 Legal guardianship
or not to know the diagnosis. We have to inform them
carefully about their diagnosis and give full informa- If a person lacks legal capacity the State (the Court,
tion to the relatives. We have to be sure that the pa- after medical expertise) may deem him as non-
tients understand the benefits, risks and alternatives competent or partial non-competent and decides to
of the treatment. In the context of incurable illness lay him under an interdiction. In Romania there are
who decides “not to treat”? In Romania “passive eu- partial guardianship and total guardianship for partial
thanasia” is illegal like in most European countries. non-competent and total non-competent patients.
Only renunciation of maximal therapy is accepted. Art. 142 of Romanian Familial Code gives the
In the mean, the rules of the medical treatment also definition and rules for applying the legal total
apply to medical research. Elderly persons with or guardianship (“Tutela”). The patient is examined by
without dementia must be granted equal opportu- a legal medical commission who diagnoses a mental
nity for participation in research as all other persons. illness or disability and who evaluates the legal com-
Involuntary psychiatric treatment is permitted by petence. This commission decides if the patient is
law, if a person suffers mental disorders including non-competent, or partial non-competent, if he/she
dementia that is dangerous to him/her or others. lacks legal capacity to perform certain daily living
(The Romanian Mental Health Law, 2002) acts. Then the Court lays the non-competent person
under a total or partial interdiction, when legal ca-
pacity can only be restricted. The City Hall as local
2.2.4 Advance directives administrative authority decides the legal guardian-
ship and the person who will be the guardian of non-
An advance directive (advance refusal or living will) is competent patient to protect his/her interests. The
a form of planning for healthcare in advance of inca- definition and rules for applying the partial guardi-
pacity, by which people with dementia can exercise anship is written in Art. 146 of Romanian Familial
153
Chapter 23: N. Tătaru
Code. The partial guardianship (“Curatela”) can be al definitions and assessment techniques for compe-
established pre-guardianship, by the setting up of tency in elderly adults. Ethical problem for all forms
the guardianship, intraguardianship and interguardi- of dementia is the decision about the right time to
anship or postguarduanship when the guardian is transfer the patient to a nursing centre and to reduce
changed (he is ill, he is dead or he is unwilling). the therapeutic program using expensive drugs.
3.2 Enduring power of attorney References
Baker RR (1998) A practice guideline for assessment of com-

The power of attorney covers the case of temporary
petency and capacity of the older adult. Professional Psy-
or partial incapability being an alternative to legal
chology: Research and Practice in the Public Domain 29(2):
guardianship, avoiding the Court proceeding. The 149–54
patient should understand that the attorney will be Fazel S, Hope T, Jacoby R (1999) Assessment of competence
able to assume complete authority over the donor’s to complete advance directives: validation of a patient
affairs and should understand the effect of this act. centred approach. BMJ 318: 493–97
In Romania ensuring the power of attorney does not Kaplan HI, Sadock BJ (1991) Geriatric psychiatry. In: Synopsis
require the assessment of legal competence. of psychiatry behavioral science. Clinical psychiatry, 6th
edn., pp 820–35
Kaplan HI, Sadock BJ (1993): Comprehensive textbook of
psychiatry, 8th edn., pp 3797–3806
4 Conclusions Mental Health Law: Monitorul oficial al Romaniei, XIV, No. 589,
8 August 2002
The practitioner involved in competency and capac- Oppenheimer C (1997) Ethics and the psychiatry of old age,
ity assessment of the older adult faces two major In: (Jacoby R and Oppenheimer C, eds.) Psychiatry of the
problems: lack of agreement on conceptual models elderly, 2nd edn., chap. 38, pp 709–35. Oxford University
Press, Oxford
to organize the assessment and changing legal con-
Post SG (1995) The moral challenge of Alzheimer’s disease.
text in which the competency assessment occurs. John Hopkins University Press, Baltimore
Ethical dilemmas never allow us simply to suspend Webber LS, Reeve RA, Kershaw MM, Charlton JL (2002)
judgement and do noting’ (Catherine Oppenheimer, Assessing financial competence. Psychiatry Psychol Law
1995). There is an absence of consensus on conceptu- 9(2): 248–56
154
Chapter 24
PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: SPAIN
Fernando Marquez and Raimundo Mateos
1 Introduction and Maza-Martín, 2005; Cortés-Domínguez and

Moreno, 2001; Fernández-González, 2001; Santander,
In Spain the issues dealing with competence and in- 2000; Simón-Lorda, 2000).
competence proceedings are essentially regulated Spain is one of the most aged countries in the
by the Código Civil (Spanish Civil Code) and the Ley world: currently the persons older than 65 and 75
de Enjuiciamiento Civil (Spanish Rules of Civil Law account for 17% and 8% of population respectively
Procedure), as well as by the Código Penal (Spanish and projections for 2050 increase such percentages
Penal Code), regarding matters pertaining to the to 31% and 17%, respectively. It is for this reason that
special protection of the incompetent as a victim. all matters on legal, social, ethical and health issues
As to Informed Consent, whether in the case of di- connected with aging constitute a subject worthy of
agnostic tests and interventions or their involvement study and analysis in all domains of society. Aware-
in research or teaching projects, the basic regula- ness about dementia in professional and media cir-
tion (pertaining to patients) is the Ley de Autonomía cles has spectacularly increased over the last decade
del paciente y del derecho al acceso a la información and a case in point is the publications on the subject
y documentación clínica (2000) (Spanish Law on the both in scientific journals and for the public at large.
Autonomy of Patients and their Right to Access to The assessment of competence and other important
Information and Clinical Documentation), which legal issues for patients suffering from dementia and
includes the contents of the Convention on Human their relatives has been specifically tackled in two re-
Rights and Biomedicine (Oviedo, 1997), which be- cent consensus documents, one of them developed
came mandatory in Spain by parliamentary agree- by the Spanish Society of Psychiatry and the Spanish
ment in 2000. We should not forget, however, that in Society of Psychogeriatrics (Castellano and Villanue-
geriatric psychiatry it is not uncommon to find situa- va, 2005) and the other by the Spanish Society of Neu-
tions in which legal regulations are lacking, however, rology (Boada and Robles, 2005). Perhaps initiatives
a decision still has to be made; in this situation the like these may in the future bring about a professional
clinician has to draw in bioethics (Calcedo-Barba et consensus on protocol procedures for the assessment
al., 2002). of competence in dementia.
The considerations and references made in each
of the paragraphs below are applicable to persons
who have been diagnosed with dementia. Its exten- 2 Incompetence versus competence
sion, limits, persistence and degree of impairment
must be adapted to their level of cognitive impair- The first issue that must be settled is the criterion of
ment arising of the typology of the dementia and its legal capacity in reference to a person (human being)
stage, as analyzed in different publications of legal so that they may be deemed in full exercise of their
psychiatry used in this field (Arechederra-Aranzadi, duties and rights. This capacity is linked to their le-
2004; Cabrera and Fuertes, 1997; Carrasco-Gómez gal personality. Every human being is, in principle,
Chapter 24: F. Marquez and R. Mateos
endowed with it. Under certain conditions, however, take the measures it deems suitable for the adequate
its exercise may be subject to limitations to a greater protection of the alleged incompetent, or their estate
or lesser extent. This legal capacity, as defined in the and will inform the public prosecutor’s office.
Código Civil Español, arises at the moment of birth Medical Opinion: The medical opinion on the
and expires with death. Legal capacity is relevantly existence of grounds for incompetence as regards
expressed as the capability to “act”, “do”, exercise and the person subject to the incompetence proceeding
perform rights and duties; govern oneself in accord- is construed as an indispensable requirement and
ance with the principle of personal autonomy; and shall follow the submission of forensic psychiatric ev-
ability to administer and manage one’s own proper- idence which shall include the existence of grounds
ties. Such full exercise of one’s rights and duties cor- for incompetence, if any, their extension and degree,
responds to persons of legal age and it is limited, al- whether it is reversible or not and how it affects the
beit strongly protected, for minors. person’s ability to manage their own affairs and es-
The exercise of legal capacity (which in the tate.
medico-legal system is called competence) may be The incompetent as a victim is contemplated in
affected or be partially or fully lost either temporally the Código Penal, which envisages protection and de-
or permanently so that the legally incompetent be fense measures for persons suffering for special des-
placed under guardianship or curatorship, delegating titution before the aggressions and abuse of others,
on a third person by a decision of the court in a judge- usually with the aggravation of the penalties when
ment on completion of the legal incompetence pro- the victim is an incompetent.
ceeding pursuant to sections 756ff of the Ley 1/2000
(de 7 de enero) de Enjuiciamiento Civil (Law 1/2000 of
January 7 of Civil Code Procedure). 3 Protection of property
Grounds for incompetence include “illnesses or
permanent disabilities whether physical or psychic Prodigality: in the event that a person indulges in
that prevent the person from managing their own af- irrational expenses of an amount such that they en-
fairs”. Anyone may commence an incompetence pro- danger that person’s estate and that of those who by
ceeding by informing the public prosecutor’s office or association or relation to that person are entitled to
alternatively the very public prosecutor by their own claim them. The grounds shall be a mental disorder
initiative, the alleged incompetent or first or second that seriously affects the person’s ability to manage
degree relatives; furthermore, the authorities and their estate (manic, delirious and serious impulse
public officers who, by reason of their office, should dyscontrol symptoms would be typical examples of
know of any ground for incompetence must inform clinical events that may manifest in the course of de-
the public prosecutor’s office. mentia).
The court decision (judgement) shall determine The protection measure in this case would be
both the extent and the limits of the incompetence the curatorship, which entails a partial restriction of
or of the acts of self-management of property in the the capacity to exercise civil rights whose effects are
event of a declaration of prodigality as well as the mainly restricted to assets with a view to ensure its
appointment of a guardian or curator who is respon- validity and efficiency in time while assets are pro-
sible for the care and management of the incompe- tected. The same persons and institutions that may
tent. In both cases, when the person is pronounced commence an incompetence proceeding may also
incompetent or prodigal, a new procedure may be proceed in the declaration of prodigality.
commenced that restores competence when condi- The applicable legal norm is Ley 41/2003 (de 18 de
tions apply. The Court, upon learning of the existence noviembre) sobre Protección Patrimonial de las perso-
of grounds for incompetence, may of its own motion nas con discapacidad (Law 41/2003 of November the
156
Practice of competence assessment in dementia: Spain
18th on Asset Protection of handicapped persons), 5 Informed consent (for diagnosis/treatment/

including those suffering from serious cognitive im- research/teaching)
pairments compatible with dementia. This law envis-
ages the following: Informed consent must be an interactive process that
entails a level information that is sufficient enough
– The creation of a protected state that will be ex- in quantity (adapted to the cultural, education and
clusively used for the care, protection and well intelligence level and the languages of common use)
being of the disabled person whether it is man- and comprehensible enough so that the person who
aged by the same person or by tutors, curators or must give consent can assess what is being proposed
guardians or by non-profit, specialized special- to them (diagnostic test or therapeutic intervention)
ized institutions, all of which shall be subject to and the consequences (those which will occur, those
the supervision criteria of the administrators of which might occur and those foreseeable because of
the said estate and in any case subject to insti- the person’s specific health condition and character-
tutional suspension by the Public Prosecutors’ istics as well as the consequences it might have on
Office. relevant areas of that person’s life and their quality of
– Self-guardianship: the possibility, contemplated life).
by law, in virtue of which a person with capacity When the test poses a life risk or one with serious
to act may take the steps they deem suitable as consequences, consent shall be given in writing and
a precaution against their own future incompe- be signed by the consenting person. It shall always
tence. This may be especially important in cases be reversible. At the very least, it shall be verbal and
of brain degenerative diseases. must be included in the person’s history. A sufficient
interval of time is advisable between the informing
and the consenting so that the person may meditate
4 Capacity to enter a contract and make a will on it, consult other persons, who may or may not be
before a notary relatives, request clarification or further information
to the doctor providing the information. Consent is
It is presumed and accepted as full, unless there is given for a specific test or intervention and must be
proof to the contrary. Whether in this case or in a pri- given for each of them.
vate contract it is necessary to prove that as a conse- In research procedures, rigor must be absolute;
quence of a psychiatric disorder the person was not especially if the consenting person shall not derive
competent (knowledgeable of the act, of its conse- any direct benefit of the results thereof and under no
quences and their freedom) to enter such document, circumstance shall the procedure represent a serious
will or contract at the moment of executing it. This is risk for the participating patient.
much more easily proven in the event of a persistent Voluntary admission to a hospital by reason
and progressive disorder as opposed to a transitory, of psychic disorder is envisaged in section 763 of the
temporal one (as it is the case of the first stages of de- Ley de Enjuiciamiento Civil. Involuntary admission
mentia). Whatever the case, a previous declaration of to a psychiatric ward whether in a general hospital
incompetence is not required to render the contract (where most cases occur) or in a psychiatric hospi-
void if psychic incompetence for entering such con- tal requires a court authorization which shall be
tract at the moment of formalizing is proven. obtained prior to such admission, except in cases
of emergency which force to take such measure im-
mediately. In such cases, the person responsible for
admission to hospital shall report the admission to
the relevant court within 24 hours and the court shall
157
Chapter 24: F. Marquez and R. Mateos
have 72 hours to confirm or not the admission. Be- may also be appointed as interlocutor with the doc-
fore granting authorization or confirming admission tors when the patients cannot decide for themselves.
to hospital, the relevant court shall hear the affected Advance directives are only valid for the pro-
person, the public prosecutor’s office and any other cedure and exact case they describe, provided they
person the courts deems relevant. The court shall do not infringe the legal framework in force. They
furthermore directly examine the person subject to are reversible, must be entered in an official record
the procedure and hear the expert opinion of a doc- office and must be periodically confirmed (periods
tor appointed by the same court. will be determined in a Regulation currently been
The admission to hospital order issued by the drafted).
court shall also include the obligation by the doctors There shall be at least one such record office with
treating the person of informing the court at least a national scope ( for the whole of Spain) although it
every six months on the need to maintain the meas- will be kept in collaboration with those autonomous
ure except when the court should order more fre- communities that decide to put in place their own.
quent or complementary reports. Notwithstanding Whether in the case of informed consent or ad-
this, when doctors treating the involuntary patient vance directives in patients with mental disorders
deem suitable to discharge the patient, they may do care and precaution in the procedures shall be up-
so by immediately informing the court. Doctors may permost.
not discharge the patient without a prior authoriza-
tion by the court when this measure has been taken
as an alternative to imprisonment in pursuance of 7 Mentally disordered offenders
the Código Penal.
A voluntary admission to a psychiatric ward, In cases of mentally disturbed persons who have
without intervention of a court, may become an in- committed crimes it shall be at the discretion of the
voluntary admission if doctors deem it necessary and court to impose measures restraining liberty (admis-
commence the relevant proceedings to obtain court sion to a suitable health and/or education institu-
authorization. tion) or other types of restrictions (injunctions, revo-
Outside the scope of mental illnesses, there is cation of the license to carry firearms or of the driving
the possibility of involuntary internment for any pa- license and professional disqualifications) which may
tient when there is a public health risk. In such a case, include undergoing outpatient treatment at medical
a court shall be informed of the internment within 24 or social/health centers for up to 5 years.
hours (Ley Orgánica 3/1986 de Medidas de Defensa
de la Salud Pública; included in Ley 41/2002 de 14 de
noviembre, which regulates Patient’s Autonomy and 8 Driving motorized vehicles and possession
the rights and duties as regards clinical information of firearms
and documentation.)
Generally speaking, the professionals’ duty to report
is confined to crimes and situations that have the
6 Advance directives appearance of criminality as defined in the Ley de
Enjuiciamiento Criminal (Spanish Code of Criminal
Formerly known in Spain as living will and more re- Procedure). Otherwise, consensus documents advise
cently as “voluntades anticipadas”, advance directives professionals to act prudently before this situation
are concerned with the extension of the principle of and recommend the patient (and their relatives) not
autonomy to the moment in which the affected per- to drive on the basis of the risks posed by the disorder
sons may not decide for themselves. A representative or the side effects of medication.
158
Practice of competence assessment in dementia: Spain
Certified and authorized offices conducting the References

mandatory competence and aptitude tests required
for obtaining a driving license operate in accordance Arechederra-Aranzadi JJ (2004) Psiquiatría y ley. Tres Cantos,
with the following criteria. You & Us, SD
Boada M, Robles A (2005) Análisis y reflexiones sobre la ca-
Generally speaking, the renewal of a driving li-
pacidad para tomar decisiones durante la evolución de una
cense and the corresponding evaluation occurs from
demencia: “Documento Sitges”. Editorial Glosa, Barcelona
the moment of legal age a) up to the age of 45, every Cabrera J, Fuertes JC (1997) Psiquiatría y derecho. Cauce Edi-
ten years; b) between the ages of 45 and 70, every 5 torial SL, Madrid
years; c) older than 70, every 2 years. There are re- Calcedo-Barba A, Gil-Gregorio P, Castelli-Candia P (2002) Legal
strictions to these periods in the case of some illness- aspects in dementia. Curr Opin Psychiatry 15(6): 577–81
es. Thus, for those suffering from monocular vision Carrasco-Gómez JJ, Maza-Martín JM (2005) Manual de psi-
quiatría legal y forense, 3rd edn. La Ley-Actualidad SA, Las
impairment, diabetes or cardiopathy renewal periods
Rozas
are 5, 4 and one year respectively.
Castellano M, Villanueva E (2005) Aspectos legales y éticos.
In the case of serious mental disorders which re- In: Sociedad Española de Psiquiatría, Sociedad Española
quire psychopharmacologic treatment: de Psicogeriatría (eds), 2nd edn., SANED, Barcelona, pp
91–117
(a) When it pertains professional licenses, heavy- Cortés-Domínguez V, Moreno V (2001) La nueva ley de enjuic-
duty vehicles or public transport vehicles, the iamiento civil. Editorial Tecnos, Madrid
general rule is to deny them. Fernández-González B (2001) La incapacitación de los an-
cianos en la nueva Ley de Enjuiciamiento Civil. Actualidad
(b) As to private cars, the person making the assess-
Civil 4: 1647–58
ment in each case shall determine which renew- Santander F (2000) Ética y praxis psiquiátrica. Asociación Es-
al period should be applicable (it could be one pañola de Neuropsiquiatría, Madrid
year or even 6 months) as well as the speed limit Simón-Lorda P (2000) El consentimiento informado, historia,
applicable to that person. teoría y práctic. Editorial Triacastela, San Sebastián
159
Chapter 25
PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: SWEDEN
Karin Sparring Björkstén
The Swedish word “rättshandlingsförmåga” or legal stands. On the other hand, it does happen that de-
competence refers to an individual person’s law- mented persons are deceived with the help of old or
ful right to make agreements and decisions about new powers of attorney.
his or her property and life. All adults in Sweden are
considered to have legal competence unless proven
otherwise. During the past decades, the Swedish so- 2 God man (“Good man” or “Mentor”)
ciety has moved towards more respect for individu-
als, albeit demented, mentally ill or retarded. Respect If the patient’s business cannot be managed within
for everyone’s autonomy is emphasized in social and the family, the court can appoint a “god man” (“good
medical law. The law states clearly that as little coer- man” or “mentor”) (Children and Parents Code,
cion as possible should be used. 1949a). About 60,000 people, many of whom are de-
Until 1989, legal guardians were appointed to mented, have a “good man”. Applying for a “good man”
adults with mental disorders or mental retardation. is a routine procedure in elderly care. A social inves-
Those adults lost the right to decide about their own tigation, usually made by a social worker is needed.
financial and legal affairs, as well as the right to vote If the patient understands the idea of getting a “good
and to get married without special permission. man”, (s)he must sign that (s)he accepts this. If the
After abandoning legal guardians, there are three patient does not understand, a doctor’s certificate is
possibilities for those who need assistance in manag- needed. There is a simple form to be filled out but no
ing their economy and private lives. formal requirements how the patient should be as-
sessed. Any physician licensed to practise medicine
in Sweden can write this certificate.
1 Power of attorney Patients, doctors and relatives usually do not
need to appear in court. Any adult, man or woman,
Anyone with legal competence is allowed to sign a can be a “good man” and relatives often volunteer.
power of attorney for someone else to take care of The “good man” should make sure that the eco-
his or her business. This is common among family nomy is in good order and that the patient gets the
members and close friends. The power of attorney is social support needed. The “good man” has the legal
not valid if the patient does not understand the na- right to apply for social benefits, and to deal with au-
ture of it. This excludes many patients with dementia thorities on behalf of the patient, but is not allowed
from this possibility. There is also confusion about to do anything against the patients expressed wish.
the validity of the power of attorney: Even if the pa- The patient retains all legal rights, whereas the “good
tient understood what (s)he was doing when sign- man” has several restrictions. A “good man” may not
ing it, is it still valid when dementia has progressed? provide adequate protection if the patient is active
Some banks refuse to accept a power of attorney after and lacks judgement. On the other hand, it does hap-
calling patients who neither remembers nor under- pen that “good men” deceive patients, since there is
Chapter 25: K. Sparring Björkstén
little control of what they actually are doing. Tragic nology. Medical universities teach very little law, and
cases have been reported in the media. law schools teach very little medicine.
Many doctors do not know what to do with ques-
tions regarding their patients’ legal competence. Most
3 Förvaltare (“Administrator”) medical departments dealing with dementia would do
a regular dementia work-up. If available, a neuropsy-
If a “good man” cannot provide the patient enough chological test by a psychologist would be done. How-
protection, the court can appoint a “förvaltare”, an ever, neuropsychologists are scarce. Consequently, a
administrator (Children and Parents Code, 1949b). demented patient cared for in a family practise may
This is as close as we come to a legal guardianship. sometimes never be tested by a neuropsychologist.
The patient loses a number of rights, such as signing
binding legal arrangements or economic agreements,
but keeps the right to vote and to get married – and 5 Will
to run for office. About 6000 people have administra-
tors. The law states that “A will that has been written un-
Since a patient who has a “good man” still has le- der the influence of a mental disorder is not valid”
gal competence, (s)he can give away money or sell the (Inheritence Code, 1958a) and that “If someone has
house for a fraction of its value or be used by greedy forced testator to write his will or abused his lack of
persons. An elderly person who cannot resist an off- judgement, weakness or dependence, the will is not
spring begging for money may have to be protected valid” (Inheritence Code, 1958b). Wills are usually
by an administrator. written without any medical assessment.
An administrator can be appointed by the court If inheritors want to question a will, they must
if it is not otherwise possible to limit the patient from take the issue to court. Anything can be used as evi-
his/her activities, or others’ abuse of the patient’s lack dence in the trial. Medical staff that has cared for the
of judgement. It is hard to obtain court approval of an patient can be called as witnesses. Other experts can
administrator. Other solutions have to be excluded or be asked by the parties to review patient records and
previously tried and carefully documented. A doctors’ other evidence. This is often difficult, since patients
certificate is always required, and must be highly mo- seldom have been assessed with regard to legal com-
tivated and carefully written. Any doctor licensed to petence. In a civil action, like questioning of a will,
practise in Sweden can write this certificate, although the parties and not the court have to find expert wit-
it is not considered proper to leave this task to junior nesses. There are few doctors who accept to be expert
doctors. There is usually a long delay before a patient witnesses.
gets an administrator. Unfortunately, many persons
make considerable losses because of this delay.
6 Agreements made under the influence of
mental disorder
4 Legal competence from a medical
point of view It is not unusual that patients with dementia or other
mental disorders do business that they would not
There are no generally accepted ways to determine have done if they had been healthy. There are laws
who has or has not legal competence. Doctors usually that protect the patients. Unfortunately, those laws
regard it as a legal problem, whereas lawyers consider are not well known within the medical community.
it to be a medical issue. Doctors and lawyers seldom “An agreement made under the influence of
meet, and generally do not speak in the same termi- mental disorder is not valid” (Law concerning agree-
162
Practice of competence assessment in dementia: Sweden
ments under influence of a mental disturbance 1924). 9 Conclusions

If a patient has bought or sold something under the
influence of a mental disorder, any doctor can write In summary, all Swedish adults are considered com-
a simple certificate and refer to the above law. The petent unless proven otherwise, and the law is of
family should be instructed to bring the certificate to little help when assessing legal competence. There
the shop and explain the problem. In case of major are laws that provide some protection to persons
issues, like selling a house, the family should be in- with dementia and other mental disorders. There
structed to get in touch with a lawyer. is a great need for guidelines and knowledge in the
medical care system to assess legal competence. Law
is not well known to health care professionals and
7 Impediments to marriage medicine is not well known to the legal professionals.
Legal professionals dealing with demented subjects
Impediments to marriage according to Swedish law need to learn more about medical aspects. The life
are (1) age less than 18 years of age, (2) being closely span and situation for people with dementia is totally
related or (3) already being married. Having a “good different today than a few decades ago. Revision of
man” or “administrator” is not an impediment to the Swedish law concerning the rights and the pro-
marriage. Actually, there are no explicit requirements tection of people with dementia is needed.
in the law about the parties actually understanding
the significance of marriage. The Supreme Court has
therefore tried a case where a demented person was References
married to a non-demented person (Supreme Court
1994: 23). It was found that the intention of the law Swedish laws are found on the website of the Swedish Parlia-
is that the parties must understand what they are ment; http://www.riksdagen.se/
doing. It is the person who officiates at the marriage Children and Parents Code a (Föräldrabalken 1949: 381 11 kap
that is responsible to check this. 4 §)
Children and Parents Code b (Föräldrabalken 1949: 381 11 kap
7§)
Inheritence Code a (Ärvdabalken 1958: 637 13 Kap 2 §)
8 Elections Inheritence Code b (Ärvdabalken 1958: 637 13 Kap 3 §)
Law concerning agreements under influence of a mental dis-
It is not possible to deny Swedish adults the right to turbance (Lag om verkan av avtal, som slutits under påver-
vote. Anyone who has the right to vote also has the kan av en psykisk störning 1924: 323)
right to run for office. Supreme Court (Precedent) (Högsta Domstolen 1994: 23)
163
Chapter 26
PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: SWITZERLAND
Marc Graf and Eva Krebs-Roubicek
According to estimates of the Swiss Alzheimer As- – Recording response to different interventions
sociation, about 96,000 persons suffer from different (pharmacotherapy, sociotherapy, psychothera-
forms of dementia in Switzerland. We expect 21,000 py).
new cases per year, every year about 18,000 persons
suffering from dementia die. One third of patients To assess strengths and weaknesses of evaluation
are correctly diagnosed, one third suffers presumably relative to a standardised scoring system a detailed
from a cognitive disorder, but for one third of the pa- research program has to be established in order to in-
tients the cognitive disorder has not been recognised. troduce screening and rating scales, specific tests, be-
More than half of the persons suffering from demen- havioural checklists, interview-based questionnaires
tia live at home and about 40% in an institution. We and detailed measures of cognition, ADL and general
estimate, that 300,000 relatives are directly involved. functions.
Only 25% of persons suffering from dementia receive The law relating to the elderly demented indi-
specific drug treatment, and only 20% receive specific vidual and to those responsible for their care varies
non-drug treatment. widely from country to country. In Switzerland feder-
In Switzerland the diagnosis of dementia is often al civil law is applied quite different in the 24 cantons
carried out in memory clinics, in multi-disciplinary in specific cantonal laws and regulations. As in most
working collaboration of neuropsychology, psychia- modern countries, self-determination of any person
try of the elderly, geriatric medicine, neurology, neu- from birth to death is guaranteed by the constitution.
roradiology, social workers and nursing staff. As a consequence, any medical act, such as an opera-
In order to improve the diagnosis and the treat- tion but also the administration of drugs is, as a mat-
ment of dementia the following principles of assess- ter of principle, unlawful, if not permitted by
ment have to be established:
(a) the consent of the patient,
– Recognising cognitive deficits, describe premor- (b) the consent of his (legal) representative in pa-
bid functional ability and behaviour. tients habitually incompetent and
– Record past and present general medical status (c) good medical practice and commensurability in
and medication. momentarily incompetent patients (emergency
– Objective assessment, especially useful in cases cases).
of mild to moderate dementia.
– Establish specific patterns of cognitive deficits. This would literally imply that, in any demented per-
– Differential diagnosis of depression and demen- sons, who are not competent to consent, a legal rep-
tia. resentative ( for this affair) should be imposed (“Ver-
– Formal assessment of the impact on caregivers tretungsbeistandschaft”, Art. 392 Paragraph 1 Swiss
living with and looking after a person with de- civil code). For persons, who are, due to mental disor-
mentia. der or dementia, not capable to manage their affairs,
Chapter 26: M. Graf and E. Krebs-Roubicek
who are in need of continuous protection and care or • Manipulate information rationally to gain
peril the safety of others, legal guardianship has to be logical and consistent conclusion
established. – An independent patient’s advocate may help
Unfortunately Swiss authorities are very con- decision making. Alternatively reference can be
servative ordering such measures if not requested made to a committee set up to consider legal is-
by the respective person. (Side note: How should an sues. Neither should merely be used as a way of
incompetent person dependably ask for legal guardi- passing on to others the responsibility for diffi-
anship?; mostly the significant others have to ask for cult decisions.
help!) This reluctant attitude is partly a backlash from – Decision-making ability may change over time,
widespread abusive practices up to the seventies, as, for example as dementia progresses or delirium
for example, to impose systematically guardianship resolves. Re-evaluation of capacity may be re-
for children from ethnic minorities, sterilizing men- quired at regular intervals, to determine wheth-
tally disabled women surgically and setting mentally er competence has been lost or regained.
disabled men under anti-androgenic medication.
As a result, Swiss physicians, especially when deal- If the patient is considered incompetent, then some-
ing with mentally ill and/or demented patients, hover one else must make the decisions for him. According
between legal preconditions and daily practice. The to the above mentioned practice, this may be their
daily practice formed the following main principles of next relative, their professional adviser, someone le-
common law in dealing with demented patients: gally appointed by the patient, while he was still men-
tally capable or some legal advisor.
– A diagnosis of dementia should not automati- The following points should be considered dur-
cally mean that the patient’s views are no longer ing the process of decisions making:
to be considered. However, only competent per-
sons are able to make voluntary and informed – The primary care physician is ultimately respon-
choices that are ethically and legally valid. sible for any medical decisions in the best inter-
– Individuals capable of making their own deci- est of the patient and will be accepted by a re-
sions should always be allowed to do so, in keep- sponsible body of medical opinion
ing with the ethical principles of respect for – Judging capacity for consent will, at least, be
autonomy and justice. For those not capable of greatly influenced by medical opinion leading to
making their own valid choices, the family and diagnosis. The physician involved should gather
professionals’ responsibility is one of protection. information from all available sources as well as
– Assessing competence is never easy and patients carefully assessing the patient, who should be
may be competent to make their own decisions. helped to understand and contribute to the de-
In general, patient’s views should be paramount, cision making
unless others will be adversely affected or there – Close family and friends should be consulted be-
is concerns about safety (e.g., driving). fore a final decision has been made. They may be
– Aspects to be considered when making a deci- able to provide information about what the de-
sion about competence should include the abil- mented patient would have wanted, if he or she
ity to: were able to express their opinion openly
• Communicate and maintain a stable choice – A second opinion is always wanted if there is an
• Understand (and remember) relevant in- uncertainty
formation in order to make an informed
choice An expert commission has conceptualized during the
• Grasp the significance of the situation last 15 years a draft for a new law concerning guardi-
166
Practice of competence assessment in dementia: Switzerland
anship which the federal council will decide to accept have the opportunity to take part in research. How-
in the next two years. Consultation of stakeholders ever, they also retain the right to refuse to cooperate.
like political parties but also organisations of patients
and relatives as well as the association of Swiss physi- – Issues of consent and confidentiality must be re-
cians proved general agreement. The most important spected and addressed. When informed consent
changes concerning the topic of demented persons from the person with dementia is not possible,
will be: consent from their legal representative is appro-
priate.
– In case of complete or partial incompetence, the – Non-therapeutic research (without possible ben-
following persons, in this order, have to act (they efit to the individual involved) is especially diffi-
are obliged to) in place of the respective patient, cult to justify in those unable to give their own
regarding outpatient as well as patients dur- fully informed consent.
ing hospital treatment (new Art. 378 Swiss civil
law): As dementia progresses, this can severely influence
(1) the person denominated in an advance di- the activities of daily life and the performance of the
rective; patient. One of the most common examples is the
(2) the legal assistant deputizing the patient (in driving ability which is inevitably compromised as
case of official assistance); dementia develops:
(3) the spouse or, in homosexual couples, the
legal partner, if they share the household – There is a general consensus that persons with
with the incompetent person and care for moderate to severe dementia (CDR stage 2.0 to
her; 3.00) are not safe to drive.
(4) the person, sharing the household with the – The relative risk of crashes for drivers with VaD
incompetent person and caring for her; of CDR stage 1.00 is greater than society toler-
(5) the offsprings, ates for any other group of drivers.
(6) parents and
(7) the siblings, if they also care for the incom- Furthermore, the following factors influence driving
petent person on a regular basis. safety:
This will give partners and relatives much more
competence but also responsibility. Physicians – Loss of cognitive abilities; particularly deficits of
no longer are allowed to decide on their own for attention and of complex reasoning.
the incompetent person according to her or his – Loss of visuo-spatial skills, difficulties in dealing
apparent will. with visual stimuli under conditions of divided
– Legal measures to assist partially incompetent attention and switching skills.
persons will be much more flexible, graduated – Personality changes (especially in the frontal
and specific for the respective person lobe dementia).
– Patients advance directives will become obliga- – Lack of insight and impaired judgement.
tory to follow (new Art. 370 ff.). – Loss of ability to compensate in different situa-
– The cantons are allowed to impose additional tions reduces the ability to drive.
legal regulations for outpatient measures (new – Even early in the course of illness there is evi-
Art. 437). dence that patients are more at risk of road traf-
fic accidents and they may become occasion-
If treatment of dementia is to improve, then research ally or regularly lost. Forgetting where the car is
is essential. Every individual with dementia should parked is frustrating, but not a safety issue.
167
Chapter 26: M. Graf and E. Krebs-Roubicek
Therefore lately introduced regulations oblige per- centred care has become central to provision of high
sons aged 70 and above to check their ability to drive quality dementia care. Good management will also
on a yearly basis at physicians mandated by the au- require the patient and caregiver to be regarded as a
thorities. Before, those checks were largely optional partnership. Considering carer’s concerns will often
and performed by family doctors. result in a better long term outcome for the patient.
Active treatment of troublesome symptoms and or-
ganisation of good quality care will favourably influ-
Conclusions ence the outcome of all patients.
Competence can express to have the ability to un-

derstand, appreciate, reason and decide on specific,
References
important issues of daily life. During the manage-
ment of demented patients the competence must be
Bayer A, Reban J (2004) Alzheimer’s disease and related condi-
considered. Good management of demented patients tions. Medea Press – M. Bransovsky, Rudolfov, CZ
requires considerable community based resources, Swiss Consensus for Diagnosis and Care of Demented Persons
backed up by easily accessible hospital and residen- in Switzerland 2007 (in press)
tial facilities. The concept of personhood and person- Schweizerische Alzheimervereinigung (2004)
168
Chapter 27
PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: CZECH REPUBLIC
Iva Holmerová, Martina Rokosová, Božena Jurašková, Hana Vaňková, Hana Čvančarová, Pavla Karmelitová, and
Eva Provazníková
In Czechia, Alzheimer’s disease and other diseases uations because they often consider the competence
causing dementia have been a topic of discussion only limitation to be harmful for the patient and his/her
since last 10 years. Before, the syndrome of dementia dignity especially because it is considered to be a neg-
was considered to be a consequence of atherosclero- ative label (Holmerová, 2004; Holmerová et al., 2003).
sis, or better to say, the component of atherosclerosis.
In other instances, dementia was considered to be a
part of normal ageing, not a disease. This situation 1 The consent with treatment and stay in an
has changed substantially which may be also due to institution
the activity of the Czech Alzheimer Society which
started its activity in 1997. According to the legislation of Czech Republic, Act no
The primary medical care for patients with de- 86/1992, a person may be admitted to a health care
mentia is provided by general practitioners. Each institution without having given his/her own assent
general practitioner provides care to those persons only in the following situations:
who are registered in his/her office. The care for
those persons is reimbursed form the general health – In cases of diseases listed in a special regulation,
care insurance on the basis of capitation (per capita where it is possible to impose a treatment on un-
payment). willing patients;
In a situation when it is necessary to limit the – If a person afflicted with mental disorder or an
legal competency of a patient with dementia, for intoxicated individual represent danger for him/
instance because of a behavior that would threaten her and/or for other persons and the environ-
himself/herself, or which would damage the environment;
ment, physician should pass this information to a – In cases of seriously health-impaired patients in
court and suggest limitation of a legal competence. It an acute or life-threatening situation when it is
is the court which ought to take a decision about le- not possible to obtain the consent because of se-
gal competence. However, the time of the procedure verity of health-impairment.
is usually very long and, therefore, this institution is
not used in all cases for which it is adequate. Between In all of the above-mentioned situations the health
the time of the reporting to the court and the time of care institution concerned must report not later than
the decision there is usually a very long period of time 24 hours to the court which is then obliged to consid-
when substantial changes of health status and of so- er the case and decide within 7 days (Zákon 86/1992
cial circumstances can occur. The court may issue a Sb).
preliminary decision to try to settle all difficult cases; According to our experience, one may assume
however, this is not very common in the practice. On that this regulation is not applied especially to per-
the other hand, families are very cautious in these sit- sons with dementia who are not able to express ex-
Chapter 27: I. Holmerová et al.
plicitly whether they agree with the stay in the health little information concerning this important stand-
care institution. Often the sign of consent is misun- ard and, simply stated, people do not know it.
derstood. Only few health care institutions have un-
dertaken measures and adopted guidelines how to
inform persons with dementia and limited cognitive 3 Documentation on informed consent
capacity and how to get consent from them or/and
how to communicate with persons with dementia Since November 1, 2006 there is a regulation no.
to learn about their preferences. The above-men- 385/2006 on health care documentation (Vyhláška
tioned regulation also does not apply to some (in 385/2006 Sb). This regulation includes duty of a
practice) frequent situations when it is necessary health care institution to provide informed consent
to treat comorbidities of dementia or behavioral with documentation related to health care provision.
and psychiatric symptomatology of persons with This regulation defines also conditions for the refusal
dementia, conditions that worsen significantly the of health care. That is, again, valid for persons who
quality of their life but are not dangerous to their are not incapacitated legally. Especially the situation
life or to the life of others. This regulation applies of persons with dementia is very problematic from
to health care institutions, not to social care institu- this point of view as those persons are incapacitated
tions. We assume, therefore, that persons must not from the nature of the disease but they are not le-
stay in social care institutions without their consent gally incapacitated. Most of them, however, are not
and, moreover, social care institutions must not use able to consider their situation in an adequate way
any restraints. Unfortunately, this does not happen and therefore they sign “the consent” without proper
in practice and the use of restraint is a widely-criti- understanding. This situation is a subject of concern
cized topic discussed in relation with social care in by the Czech Alzheimer Society and it is necessary to
institutions (Holmerová et al., 2003). All the rules implement guidelines on Advance Directives (Alzhe-
refer to persons without legally limited competency. imer Europe) also in the Czech Republic (Advance
In such cases it is the guardian who decides on their directives, Alzheimer Europe).
behalf and in some cases he must inform the court
as well.
4 The role of ombudsman
2 Convention The amended law on the Czech ombudsman (Public

Defender of Rights) came into effect on January 1, 2006
In 1998 the Czech government adopted the Conven- (Zákon 349/1999 Sb.). As a result, the ombudsman’s
tion for the Protection of Human Rights and Dignity responsibilities have been extended very radically to
of the Human Being with regard to the Application of include the task of performing systematic visits to all
Biology and Medicine (Haškovcová, 2002). This con- places ( facilities), where persons restricted in their
vention has become a part of Czech legislation after freedom are or may be located, regardless of whether
the adoption and ratification by the Czech Parlia- the freedom of such persons has been restricted by a
ment. This Convention provides rules on how to give ruling or order released by a public authority (such as
appropriate information so that the person gives free a court), or as a result of the actual situation and spe-
and informed consent. All health care procedures cific dependence on care provided. During his visits,
may be performed only on the condition the person the Czech ombudsman examines the treatment such
concerned gives free and informed consent which people receive, endeavors to ensure that their funda-
may be freely withdrawn at any time. Some sources, mental rights are respected and boosts their protec-
however, state that the general public has only very tion against so-called mistreatment.
170
Practice of competence assessment in dementia: Czech Republic
Controls of the ombudsman office raise recom- are imbedded in The Charter of Fundamental Rights
mendations. The latest conclusions are based on the and Basic Freedoms (Resolution of the Presidium of
Czech legislation and also on professional opinion, the Czech National Council of 16 December 1992 on
including, e.g. guidelines of Czech Alzheimer Soci- the declaration of the Charter of Fundamental Rights
ety on the use of restraint in institutions (Doporučení and Basic Freedoms as a part of the constitutional
Alzheimer Europe týkající se omezovacích prostředků). order of the Czech Republic as amended by later
regulations) and at the same time with legal capac-
ity. Constitutionally legal definition of legal capac-
5 Driving capacity ity is necessary to discriminate from the private-law
definition where according to §§ 7 – 10 of the Civil
The general practitioner who registers his/her pa- Code (Act no. 40/1964/Digest/as amended by later
tients for primary care is obliged to consider also regulations) (Zákon.č. 40/1964 Sb) legal competency
driving capacity. In all situations that are not com- to and legal capacity are differentiated. Legal capac-
patible with driving he/she is obliged to report to a ity is granted to everyone since his/her birth (and
vehicle inspectorate. Drivers older than 60 years are even before, e.g. the so-called nasciturus, an unborn
obliged to have a health check documented in regular child, if subsequently born alive, is considered as al-
intervals, this may be controlled by the police (Zákon ready in existence) until death. Legal competency as
361/2000 Sb). a competency of an individual to acquire rights and
undertake obligations by one’s own legal acts is in its
Strategies to evaluate acts of self-care and of self- entirety granted to anyone who reached 18 years of
sufficiency in order to determine degree of de- age and becomes extinct in case of death the latest.
pendence for the purpose of social care provision However an individual may be legal deprived of such
according to the law on social care 108/2006/Di- competency in given cases.
gest/. (Zákon 108/2006 Sb) According to the article § 10 of the Civil Code
(Jedlička et al., 2003, Zákon.č. 40/1964 Sb), in case an
(1) The ability of an individual to perform acts of individual suffers from a permanent mental disorder
self-care and self-sufficiency is evaluated ac- and is incapable of legal act, the court will exempt
cording to activities which are defined for each him/her from that competency (section 1). In case an
act of self-care and self-sufficiency. individual suffers from permanent mental disorder,
(2) An individual is not regarded to be capable of perhaps on account of excessive drinking, or the use
performing acts of self-care and self-sufficien- of narcotics but yet is capable of some legal acts, the
cy under the following conditions. He or she is court will limit his/her competency and will define
not able to recognize the need to act in order to these limitations (section 2). Exemption or limita-
provide self-care and self-sufficiency or is disa- tions of competency may be modified or reversed in
bled physically to act accordingly or is unable to case the reasons for such measure no longer apply.
perform correctness check for the activity per- It is a standard practice that the exemption of
formed already for some time, neither independ- limitations of legal competency becomes a matter
ently nor reliably. of civil court trial which may or may not be initiated
by a proposal, § 81 section 1 of the Code of Civil Pro-
cedure Act no. 99/1963/Digest/as amended by later
6 Legal competency regulations (Bureš et al. 2003), i.e., by official author-
ity, i.e. resolution issued by court dealing with ini-
Legal competency is a legal category which is closely tiation of trial of legal competency based on motion
related with fundamental rights and freedoms, which submitted by, e.g. state authority, health institution,
171
or a third-party individual. In this case the subjects with the competency concerned. In addition, the in-
will not become a party to the case. It is possible that dividual under review is interrogated by the court,
the court learns about circumstances based on its but this examination may be avoided if it cannot be
own research, according to which it may initiate the executed or it cannot be executed without actual
trial without a motion. harm of the individual under review. The court al-
In case the trial has been initiated based on a mo- ways interrogates an expert and based on his sug-
tion, which is granted to anyone who is competent to gestions the court may rule that the individual under
become a party to a case, i.e. anyone who is compe- review must be examined in health institution for
tent to undertake rights and obligations is legitimate a period of three months at maximum in case it is
to become a party to a case, or anyone whose com- absolutely necessary in order to enquire about the
petence is granted by the court – § 19 Code of Civil health condition. In addition to the individual under
Procedure (Zákon.č. 99/1963 Sb) the motion to ex- review, a party to the case is anyone who submits
empt from, limit or restore legal competency can be the statement of claim. During examination of the
submitted even by an individual whose competency mental condition of the individual under review the
is the one concerned. A health institution may be the court considers expertise and if he/she is incapable
submitter only in case it is competent to undertake of independent existence, matter of fact findings col-
rights and obligations and the same conditions apply lected by the court are based on the individual situa-
to welfare institutions (granted by judicature). It is a tion and living conditions of that person, i.e., the way
matter of civil procedure regulated by §§ 186 – 191 he/she behaves in daily life, how he/she is able to
Code of Civil Procedure (Zákon.č. 99/1963 Sb). satisfy the needs of the family, how he/she manages
In case it is a matter of competency of the court, resources, the behavior of his wife/her husband and
the court of material competence is the district court; his/her adult children.
the court of local competence is the court which For the sake of convenience, the court need not
the individual with the competency concerned be- decree legal proceedings and may decide to refrain
longs to. The trial is free of charge (Baštecký, 1997). from delivery of decision on legal competency, if the
The statement of claim must be provided with the delivery may have a negative impact on the mental
usual essentials. If the content of the petition regard- condition of the addressee or if the addressee is in-
ing legal competency of an individual is not explicit capable of comprehending the resolution. The court
enough, it must be made clear whether the individual takes a decision by announcing a verdict stating in-
aims at acting as a submitter or someone who initi- formation about the citizen concerned. If the court
ates inception of the trial (Bureš et al., 2003). decided on limitations of legal competence, it may
If the statement of claim is not submitted by state define the extent by further specification of the limi-
authority or health institution, the court may oblige tations (either what the individual is competent to do
the submitter to hand in medical record concerning or what the individual is not competent to do). The
mental condition of the individual under review. State status of such a citizen is then modified in such a way
authorities and health institutions as well as the indi- that he/she is no longer partly or utterly competent
vidual whose competency is the one concerned can- by entering into legal acts (possibly only by few) to
not be obliged to hand in medical record concerning acquire rights and undertake obligations. The deci-
mental condition of the individual under review. The sion, however, is valid only in terms of future without
obligation may or may not be introduced by the court. retroactive effect. The costs of the proceedings deal-
A motion to restore legal competency may be submit- ing with legal competence are paid by the state (ipso
ted even by an individual deprived of competency. jure).
After the opening of the trial the court appoints If we consider substantiation and finding of facts
a guardian for the case to represent the individual related to the trials concerning legal competence it
172
Practice of competence assessment in dementia: Czech Republic
is by no means a time-consuming procedure. The In the meantime, the court inspects the admin-
reason is that interrogation of the individual under istration of assets performed by the guardian and in-
review and other witnesses is usually followed by pro- troduces appropriate measure to find out about secu-
vision by the expert for the problem of consideration rity of the assets and to secure the assets concerned.
one’s mental condition is one where there is a need After the termination of representation the guardian
for expert knowledge. The decision by the court is submits to the court a final bill concerning the ad-
naturally dependent on the results of the expertise. ministration of the assets. However, the guardian may
The appointed expert usually prepares the expertise be obliged by the court to submit regular reports. As
in written form and the expertise is delivered to the regarding the usual matters, the guardian represents
court, eventually, to be delivered to the parties by the the individual with no or limited competence to act
court. After the submission of the expertise the ex- in law on his/her own, if it is a matter of extraordi-
pert is summoned to the proceedings decreed. The nary circumstances his acts require approval of the
expert is then given a hearing. At this point the court tutelary court.
is usually provided with enough evidence to decide in
the case. If there are no further obstacles (e.g., utiliza-
tion of court hearings, problems of delivery etc.), the
References
case may take place and lawfully end within couple
of month.
Advance directives, Alzheimer Europe, Ustanovení vůle (trans-
If the court decided on lawful limitation or dep- lation I. Holmerová), available from www.alzheimer.cz
rivation of legal competence, the trial is followed by Baštecký J (1997) Psychiatrie, právo a společnost. Galén, Pra-
another trial concerning custody where the person ha, pp 99–102
concerned is provided with a guardian, such provi- Bureš J, Drápal L, Krčmář Z, Mazanec M (2003) Občanský
sion is compulsory according to the law. The rights soudní řád: Komentář, 6. vydání Praha, C.H. Beck
and obligations related to material law are affected Haškovcová H (2002) Lékařská etika, Galen, Praha, pp 103
Holmerová I (2004) National background report on Czech
by the limitation or deprivation of legal competence,
Republic (NABARE); available from www.uke.uni-hamburg.
e.g. such an individual is incapable to act on his/her
de/extern/eurofamcare-de/, Hamburg
own during legal or other proceedings. He/she must Holmerová I, Jurašková B, Zikmundová K (2003) Vybrané kapi-
be represented by a guardian appointed by the court. toly z gerontology. ČALS, Praha
The extent of guardian’s rights and obligations is de- Jedlička O, Švestka J, Škárová M et al. (2003) Občanský zákoník:
fined by the court in the decision on appointment of Komentář. 8. vydání, C.H. Beck, Praha
a guardian. Švestka O, Jedlička J et al. (1996) Ochrana osobnosti. 3.
The approval of the individual suggested as a přepracované a doplněné vydání, Linde Praha a.s., Praha
Doporučení Alzheimer Europe týkající se omezovacích
guardian to be appointed as a guardian and the fact
prostředků (transl. I. Holmerová), available from
that he/she is a party to the case is a condition for his/ www.alzheimer.cz
her appointment as a guardian. To choose the right Sdělení Ministerstva zahraničních věcí 96/2001 Sb. O přijetí
person as a guardian is necessary in order to protect Úmluvy na ochranu lidských práv a důstojnosti lidské
the interests of the individual with no or limited legal bytosti v souvislosti s aplikací biologie a medicíny: Úm-
competency. The search for a possible guardian takes luva o lidských právech a biomedicíně, available from
place within the family circle and among people close www.mvcr.cz
Vyhláška 385/2006 Sb. O zdravotnické dokumentaci, available
to the person concerned in the first place. If no such
from www.mvcr.cz
person agrees to be a guardian or if there is no such Ústava České republiky č. 1/1993 Sb., available from
person, it is possible to appoint another suitable per- www.mvcr.cz
son and in case there is no one fitting, a public guard- Zákon.č. 40/1964 Sb. Občanský zákoník ve znění pozdějších
ian is appointed (Baštecký, 1997). předpisů, available from www.mvcr.cz
173
Zákon 86/1992 Sb. O péči o zdraví lidu (úplné znění s působ- Zákon 361/2000 Sb. o provozu na pozemních komunikacích
ností pro Českou republiku, jak vyplývá z pozdějších změn ve znění pozdějších předpisů, available from www.mvcr.cz
a doplnění), available from www.mvcr.cz Zákon 108/2006 Sb. O sociálních službách, available from
Zákon 349/1999 Sb. O veřejném ochránci práv ve znění www.mvcr.cz
pozdějších předpisů, available from www.mvcr.cz
174
Chapter 28
PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: UK
Sarmishtha Bhattacharyya and Alistair Burns
Healthcare professionals are often asked to assess an matter to be decided. According to the 2005 Act, the
older person’s competence to make a decision about patient should be unable to:
a range of circumstances including areas like testa-
mentary capacity, financial decisions, advance direc- – understand the information relevant to the deci-
tives, consent to treatment, driving, research partici- sion,
pation as well as decisions about going to a hospital or – retain the information,
a nursing home. The core symptom of dementia is the – use the information as part of the process of mak-
impairment of one’s intellect, which might lead to dif- ing a decision.
ficulties in making such decisions; however such a di-
agnosis per se does not make a person incompetent. The Act sets out a single clear test for assessing
Primarily it is important to inform a patient of whether a person lacks capacity to take a particular
his diagnosis of dementia. Whilst there is a growing decision at a particular time. It is a “decision-specific”
consensus in favour of disclosing the diagnosis of test. No one can be labelled “incapable” as a result of
dementia to the person concerned, diagnostic dis- a particular medical condition or diagnosis. Section 2
closure in dementia remains both inconsistent and of the Act makes it clear that a lack of capacity cannot
limited (Bamford et al., 2004). be established merely by reference to a person’s age,
In U.K. guidelines for good practice are available appearance, or any condition or aspect of a person’s
from various organizations, which include The Gen- behaviour that might lead others to make unjustified
eral Medical Council (GMC), the British Medical As- assumptions about capacity.
sociation (BMA), DVLA and others. In 1995, the BMA In the following sections, assessment of compe-
and the Law Society jointly produced guidelines on tence with regard to various decisions and situations
the assessment of mental capacity, which is currently are examined.
used as guidance by doctors practising here.
The Mental Capacity Act 2005 received Royal As-
sent in April 2005 and is due for implementation by 1 Testamentary capacity
2007. It provides a statutory framework to empower
and protect vulnerable people who are unable to The subject of testamentary capacity (ability to make
make their own decisions. It works on basic princi- and execute a will) needs to be addressed early on in
ples which include a presumption of capacity in an dementia. The legal standard for this function is that
individual, the right of individuals to be supported individuals must know, at the time the will is signed
in making their own decisions, the duty to act in the or executed, the extent of their property, their blood
best interest of the patient and to always choose the relations and the general nature of their material and
least restrictive option. other assets. They must also have sufficient ability to
A person is said to lack capacity if he/she is un- make a reasonable judgment based on this knowl-
able to make a decision for oneself in relation to the edge. Their judgement should not be clouded by de-
Chapter 28: S. Bhattacharyya and A. Burns
lusions or other significant mental illness. A person Another contentious area is the administration
is not bound to leave his assets to a particular person of covert medication to incapable patients who resist
but the will would clearly be invalid if he or she had it when it is given openly (incapacitated patients who
forgotten he was married or had children. do not comply). This is judged ethically legitimate
Careful and searching questions need to be in exceptional circumstances (Treloar et al., 2000).
asked and simple standard tests of cognitive function Common law has to be invoked when the provisions
are usually desirable. of the MHA 1983 do not apply. It is important to bal-
ance ease of access to good clinical care against re-
strictions, which aim to prevent abuse.
2 Consent to treatment, hospital or nursing Section 5 of the Mental Capacity Act clarifies
home admission that, if a person provides care or treatment to some-
one who lacks capacity, then this can be done with-
In UK, Courts have held (Re T) that common law out incurring legal liability. The key lies in the proper
permits every person to have a right to refuse treat- assessment of capacity and what would be in the best
ment even if such refusal should result in death. interest of the person concerned. This will cover ac-
When obtaining consent to treatment the doctors tions that would otherwise result in a civil wrong or
overriding concern must always be to do what is in crime if someone has to interfere with the person’s
the patient’s best interest under Common Law. It is body or property in the ordinary course of caring for
vital to make every attempt to ensure that the pa- example, by giving an injection or by using the per-
tient understands the nature of treatment, risks and son’s money to buy items for them would not result in
benefits. If there is incapacity, it is good practice to a civil wrong or crime.
seek the support of next of kin or carer for giving The ability to consent to medical treatment or
treatment for serious physical illness in the patient’s care is a specific form of capacity that requires cer-
best interest; however this does not give legal au- tain skills and cognitive abilities. In order to consent
thority to the next of kin to make decisions on the to treatment, individuals should be able to (BMA
patient’s behalf. For mental disorder consideration guidelines):
should be given to the use of compulsion under the
Mental Health Act legislation (1983). When there – Understand in simple language what medical
are uncertainties about the patient’s competence, it treatment is, its purpose and nature and why it is
is wise to consult either colleagues who know the being proposed.
patient or to obtain an independent second opin- – Understand its principle benefits, risks and alter-
ion, including the opinion of a psychiatrist on the natives.
patient’s mental state. – Understand in broad terms what will be the conse-
A patient’s lack of objection to stay in a hospital quences of not receiving the proposed treatment
or nursing home can often be taken as consent. This – Retain information for long enough to make a de-
is controversial and has recently been challenged in cision.
the Bournewood (2005) ruling whereby ECHR has – Make a free choice.
ruled that Common Law is not sufficient to justify
keeping such a “not unwilling” patient in hospital. These guidelines should be followed whilst assess-
A judgment of the ECHR is not directly binding on a ing for competence in consenting to any treatment.
NHS trust in the U.K. However, every trust is a “pub- However one must always remember that confusion
lic authority” under the Human Rights Act 1998 and might be transient and that a mild dementia might
therefore bound to act in a way that is compatible not affect the patient’s ability to give informed con-
with the ECHR and the cases decided under it. sent.
176
Practice of competence assessment in dementia: UK
3 Capacity to enter into a contract, including were the donor. In English law an ordinary power
marriage of attorney signed by a person who lacks capacity is
null and void, unless it can be proved to have been
General legal rules apply to contracts and the start- signed during a lucid interval. Currently, such an at-
ing point is that there is a presumption of capacity to torney has no power to make decisions concerning
enter into a contract. Four general rules are identified personal matters or medical care and treatment on
in BMA’s guidance (BMA 1995). These are: behalf of the donor, but this is going to change when
the Mental Capacity Act 2005 comes into force. This
– Specificity relative to the contract. will encompass Lasting Power of Attorney.
– Capability of understanding the nature and ef- The Enduring Powers of Attorney Act came into
fects of the specific contract and agreeing to it. force in 1985, and EPA’s became available in England
– Evidence of capacity at the specific moment in and Wales in 1986. The Act itself, states nothing about
time. the degree of understanding the donor needs in order
– Intention to enter into a legally binding con- to make a valid EPA. This was later resolved in a test
tract. case Re K, Re F, (1988) in which the judge discussed
the capacity to create an enduring power. He set out
People without capacity are bound by the terms of four pieces of information that any person creating
a contract into which they have entered, even if it is an EPA should understand;
unfair, unless it can be shown that the other party to
the contract was aware of their mental incapacity, or – the attorney will be able to assume complete au-
should have been aware of this. thority over the donor’s affairs,
If a person is covered by the jurisdiction of the – the attorney will be able to do anything with the
Court of Protection because it has been established donor’s property which the donor could have done,
on medical evidence that they are incapable, by reason – the authority will continue if the donor should be-
of mental disorder, of managing property and affairs, come mentally incapable,
that person cannot enter into any contract, which is – if the donor should be or become mentally incapa-
inconsistent with the Court’s powers. Once again for- ble, the power will be irrevocable without confir-
mal assessment of competence may be needed. mation by the Court of Protection.
Marriage is a contractual relationship. There
are instances in which one of the marital partners The judge in the case also commented that if the do-
has not appeared to fully grasp the situation due to nor is capable of signing an enduring power of attor-
dementia. Marriage contracts may be invalid if one ney but is not capable of managing and administer-
of the partners did not understand the nature of the ing his own property or affairs, that the attorney has
marriage ceremony or understand the obligations the obligation to register the power with the Court of
and responsibilities of marriage. Protection straight away. The donor and his closest
relatives must be informed of the attorney’s intention
to register the power. Both the donor and any of the
4 Capacity to deal with financial affairs relatives have the right to object to the registration of
the power. For example, if they believe that the donor
A power of attorney is a legal document by which a is not yet incapable of managing his affairs, or that
donor enables another person of his choice (the at- the power may be invalid because it has been revoked
torney) the authority to act in the donor’s name and by the donor.
on his behalf in relation to the donor’s property and Currently EPA’s are restricted to financial mat-
financial affairs. The attorney can then act as if he ters only and can take effect at once and continue or
177
when the donor becomes incapable. Like a will, an New Court of Protection
EPA can be made without a solicitor, but in practice
The new Court will have jurisdiction relating to the
it is wise to ask a solicitor to ensure that a form has
whole Act and will be the final arbiter for capac-
been correctly completed.
ity matters with its own procedures and nominated
Referral to a Court of Protection (CP) should be
judges.
considered if it is believed that the patient is becom-
ing incapable of managing his/her affairs because of
New Public Guardian
mental incapacity. Usually the nearest relative ap-
plies to the court but anyone with legitimate interest The Public Guardian and his staff will be the regis-
may apply. The doctor’s role in referrals to the CP is tering authority for LPAs and deputies. They will su-
to complete a medical certificate stating that the pa- pervise deputies appointed by the Court and provide
tient is incapable of managing his/her affairs by vir- information to help the Court make decisions.
tue of a mental disorder, the nature of which must be
described. The Court then appoints a ‘receiver’ who
manages the patient’s affairs under the supervision 5 Advance directives and end of life decisions
of the Court.
Once the CP has registered the power, the donor An Advance Directive is in most cases a document
and the attorney no longer have concurrent authori- signed by a competent person giving direction to help
ty. Only the attorney has the authority to manage and care providers about future treatment choices in cer-
administer the donor’s property and affairs. If, how- tain circumstances. Before the Mental Capacity Act
ever, even after registration the donor has capacity to 2005 comes into force there is no specific Act of Par-
perform some tasks, such as running a bank account liament in the U.K. that covers Advance Directives,
or shopping, the fact that the power has been regis- but they are recognized and must be upheld under
tered should not as a matter of practice prevent the common law as long as certain criteria are followed.
donor from carrying out these activities. The criteria required for an Advance Directive to be
This legislation and guidance is currently in valid were identified (Jones, 2005) by Hughes in AK
practice but will be superseded by the Mental Capac- (Adult Patient) and by Munby in HE vs A Hospital NHS
ity Act 2005, which comes into force in 2007 with the Trust (2003). Doctors should respect these criteria but
following changes. cannot be forced to commit illegal acts such as eutha-
nasia. The Mental Capacity Act 2005 provides a legal
Lasting Power of Attorney (LPA’s) basis underpinning the rights of an advance directive.
The following factors are addressed in the Act:
The Act allows a person to appoint an attorney (simi-
lar to EPAs) to act on their behalf if they should lose
– People may make a decision in advance to refuse
capacity in the future. It also allows LPAs to make
treatment if they should lose capacity in the fu-
health and welfare decisions.
ture.
– An advance decision will have no application to
Court appointed deputies
any treatment, which a doctor considers necessary
The Act provides for a system of court appointed dep- to sustain life unless strict formalities have been
uties to replace the current system of receivership in complied with.
the Court of Protection who will be able to take deci- – The decision must be in writing, signed and wit-
sions on welfare, healthcare and financial matters as nessed.
authorised by the Court but will not be able to refuse – There must be an express statement that the deci-
consent to life-sustaining treatment. sion stands “even if life is at risk”.
178
Practice of competence assessment in dementia: UK
The importance of Advance Directives arises espe- mediately, in confidence, to the medical advisor at
cially in situations where appropriateness of cardiop- the DVLA. Before taking action, the doctor should
ulmonary resuscitation for inpatients with dementia inform the patient of the decision to do so. Once the
arises. It is important to consider the patient’s wishes DVLA has been informed, the doctor should write
but it is also prudent to involve the carers, and mem- to the patient to confirm that disclosure has been
bers of the multidisciplinary team, especially if the made. Guidance also suggests that every reasonable
patient is deemed to be incapable. The decision, in effort to deter patients from driving should be made
the end should once again always be what the best and this may include telling the next of kin of the
option is available for the patient. situation.
DVLA acknowledges the variable presentations
and rates of progression in different patients and
6 Driving and dementia often those with mild dementia are issued a licence
subject to annual review.
It is vital that when a diagnosis of dementia has been
discussed, the patient is advised to inform DVLA of
the diagnosis. Conflicts may arise, for example, be- 7 Research and dementia
tween the need (and legal obligation) to protect the
public from an impaired person with dementia who The Mental Capacity Act 2005 sets clear parameters
is a danger when driving, and the ethical obligation for research into dementia in those who lack capacity
to preserve medical confidentiality (DVLA, 1999). to consent to participation. These mirror the present
The GMC’s position on breach of confidentiality guidelines used in practice:
and obligations under law suggests that the doctor
should take direct action to inform the DVLA if it is – Research involving, or in relation to, a person
believed that there is serious risk to public and that lacking capacity may be lawfully carried out
driving is continuing despite advice to the contrary if an “appropriate body” (normally a Research
(DVLA, 2001). It seems prudent to ensure that there Ethics Committee) agrees that the research is
is documentary record that advice of an appropriate safe, relates to the person’s condition and can-
nature has been given to the older person diagnosed not be done as effectively using people who have
with dementia and this should include driving and mental capacity.
legal obligations to inform the DVLA. This is im- – The research must produce a benefit to the per-
portant in relation to subsequent legal action such son that outweighs any risk or burden.
as from a fellow road user accidentally injured by a – Alternatively, if it is to derive new scientific
driver with dementia. The most recent 2005 (DVLA, knowledge it must be of minimal risk to the per-
2005) guidance states that it is extremely difficult son and be carried out with minimal intrusion or
to assess driving ability in those with dementia but interference with their rights. Carer providers or
those with poor short-term memory, lack of insight nominated third parties must be consulted and
and judgement are almost certainly not fit to drive. agree that the person would want to join an ap-
It emphasizes explicitly that the “DVLA must be no- proved research project.
tified as soon as diagnosis (of dementia) is made” – If the person shows any signs of resistance or in-
(DVLA, 1999). It also advises that when a patient dicates in any way that he does not wish to take
cannot be persuaded to stop driving, or when the part, the person must be withdrawn from the
doctor is given or finds evidence that a patient is project immediately.
continuing to drive contrary to advice, the doctor – Transitional regulations will cover research
should disclose relevant medical information im- started before the Act where the person original-
179
ly had capacity to consent, but later lost capacity DVLA Guidelines: http://www.dvla.gov.uk/at_a_glance/ch4_
before the end of the project. psychiatric.htm
Good Medical Practice, GMC. http://www.gmc-uk.org/guidance/
library/GMP.pdf
A balance needs to be attained between recruiting
HE vs A Hospital NHS trust. Family Division 2003
such patients for research and the need to protect the HL v United Kingdom, Application no. 45508/99, decision of 5
rights of such individuals. October 2004
In conclusion, achieving a proper legal and ethical Jones R (2005) Mental Capacity Act Manual. Sweet and Max-
balance to make decisions can be particularly taxing well, London
in people with dementia. All clinicians should ensure Mental Capacity Act 2005: http://www.opsi.gov.uk/acts/
sufficient familiarity with current legal and ethical acts2005/20050009.htm
Royal College of Physicians and Royal College of Psychiatrists
concepts and how these concepts might be applied.
(2003) The psychological care of medical patients: a practi-
No country in Europe has a specific law deal- cal guide. RCP, RCPsych, London
ing with all the different issues facing people with Re AK (Adult patient) (Medical treatment: consent) (2001) 1
dementia as well as their care providers. It would be FLR 129, (2001) 58 BMLR 151
practical for the clinician to work in conjunction with Re C (Adult: Refusal of Treatment) (1994) 1 WLR 290; (1994)
the family to resolve these dilemmas. At all times it 1 All ER 819
is prudent to discuss or seek advice from appropri- Re K, Re F (1988) 1 All ER 358
Re T (adult refusal of treatment) (1994 1 All ER 819)
ate colleagues, ethicists or even trust/hospital legal
Re T refusal of medical treatment) [(1992 4 All ER 649 (CA)]
representatives.
R v Bournewood Community and Mental Health NHS Trust, ex
parte L [1999] AC 458
Tan JOA, McMillan JR (2004) The discrepancy between the le-
References gal definition of capacity and the BMA’s guidelines. JME 30:
427–29
Bamford C et al. (2004) Disclosing a diagnosis of dementia: a Treloar et al. (2000) APT. Administering medicines to patients
systematic review. Int J Geriatr Psychiatry 19(2): 151–69 with dementia and other organic cognitive syndromes
British Medical Association (1995) Assessment of mental ca-
pacity: Guidance for doctors and lawyers. A report of the
BMA and The Law Society. BMA, London
180
LIST OF CONTRIBUTORS
Bartley Mairead, Department of Medical Gerontol- Burns Alistair, MD, FRCP, FRCPsych, Prof. of Old
ogy, Adelaide and Meath Hospital, Dublin 24, Ireland Age Psychiatry, University of Manchester, Education
E-mail: arhc@amnch.ie and Research Centre, Wythenshawe Hospital,
Manchester M23 9LT, UK
Bernabei Roberto, Prof., Direttore Dipartimento di
E-mail: alistair.burns@manchester.ac.uk
Scienze Gerontologiche, Geriatriche e Fisiatriche,
Università Cattolica del Sacro Cuore, Largo F. Vito, 1, Buss Dorthe Vennemose, Memory Disorders
00168 Rome, Italy Research Group, Department of Neurology,
E-mail: roberto_bernabei@rm.unicatt.it Copenhagen University Hospital, Rigshospitalet,
9 Blegdamsvej, 2100 Copenhagen, Denmark
Bhattacharyya Sarmishtha, Specialist Registrar in
E-mail: rh15740@rh.dk
Old Age Psychiatry, Stepping Hill Hospital, Stockport,
SK2 7JE, UK Calabrese Pasquale, Priv.-Doz. Dr.rer. nat., Depart-
E-mail: sarmishtha66@aol.com ment of Neuropsychology and Behavioural Neurol-
ogy, University Clinic (Knappschaftskrankenhaus),
Björkstén Karin Sparring, M.D. Ph.D., Specialist of
Faculty of Medicine, Ruhr-University, In der Schor-
Psychiatry and Geriatrics, Administrativa enheten,
nau 23-25, 44892 Bochum, Germany
Psykiatri Sydöst, Ektorspsvägen 2B, 131 45 Nacka,
E-mail: pasquale.calabrese@rub.de
Sweden
E-mail: karin.sparring.bjorksten@ki.se Camus Vincent, Prof., Centre Hospitalier Régional
Universitaire, Université François Rabelais de Tours,
Bouyssy Marie, M.D., Centre Hospitalier Régional
37044 Tours Cedex 01, France
Universitaire de Tours, 37044 Tours, France
E-mail: camus@chu-tours.fr
E-mail: mbouyssy@hotmail.com
Carvalho Pedro Silva, Psychiatrist, Hospital Magal-
Bowman Deborah,
hães Lemos and Hospital Prelada-Porto, Old Age
Senior Lecturer in Medical Ethics and Law,
Psychiatry Consultant of S.S. Santa Casa Misericór-
Room 43, 1st Floor, Jenner Wing,
dia do Porto, R. João Deus 777, 4100-462 Porto,
Medical and Healthcare Education,
Portugal
St George’s, University of London,
Cranmer Terrace, London SW17 0RE, UK Cerejeira Joaquim, Register Psychiatry, Psychiatric
E-mail: dbowman@sgul.ac.uk Clinic, Coimbra University Hospitals, Praceta Mota
Pinto, 3000 Coimbra, Portugal
Brand Matthias, PhD, University of Bielefeld,
E-mail: jcerejeira@netcabo.pt
Department of Physiological Psychology, 33501
Bielefeld, Germany
E-mail: m.brand@uni-bielefeld.de
List of Contributors
Čvančarová Hana, JUDr., Judge of the Appellation Hughes Julian C., MA, MB ChB, MRCPsych, PhD,
Court, Větrušická 878/28, 182 00 Praha 8 – Kobylisy, Ash Court, North Tyneside General Hospital, Rake
Praha, Czech Republic Lane, North Shields, Tyne and Wear, NE29 8NH, UK
E-mail: hcvancarova@msoud.pha.justice.cz Consultant and Honorary Clinical Senior Lecturer in
Old Age Psychiatry, North Tyneside General Hospital
Despos Katerina, Lawyer, 6, Odysseos street (1st
and the Institute for Ageing and Health, Newcastle
Parodos Ampelonon), 55535 Pylaia, Thessaloniki,
University, UK
Greece
E-mail: j.c.hughes@ncl.ac.uk
Engedal Knut, Prof. of Geriatric Psychiatry, Norwe-
Johansson Kurt, M.D., Ph.D., Traffic Medicine
gian Centre for Dementia Research, Department
Center, Department of Geriatric Medicine, Karolin-
of Geriatric Medicine, Ullevaal University Hospital,
ska University Hospital, 141 86 Stockholm, Sweden
0407 Oslo, Norway
E-mail: kurt.johansson@ki.se
E-mail: knut.engedal@nordemens.no
Jurašková Božena, MUDr., Ph.D., Consultant Ge-
Firmino Horàcio, Coordinator of Gerontopsychiatry,
riatrician, Department of Gerontology, Teaching
Psychiatric Clinic, Coimbra University Hospitals, Cli-
Hospital Hradec Králové, Univerzita Karlova v Praze,
nica Montes Claros, Rua Machado de Castro 4, 3000
poštovní přihrádka 38, Šimkova 870, 500 38 Hradec
Coimbra, Portugal
Králové 1, Czech Republic
E-mail: hfirmino@mac.com
E-mail: juraskovab@lfhk.cuni.cz
Fountoulakis Konstantinos N., Lecturer in Psychia-
Karmelitová Pavla, Mgr., Head of Department of
try, 3rd Department of Psychiatry, Aristotle Uni-
Health and Social Care, Odbor zdravotnictví a
versity of Thessaloniki, Greece, 6, Odysseos str. (1st
sociálních služeb, Úřad MČ Praha 8, Zenklova 1
Parodos Ampelonon), 55535 Pylaia, Thessaloniki,
180 48 Praha 8, Czech Republic
Greece
E-mail: pavla.karmelitova@p8.mepnet.cz
E-mail: kfount@med.auth.gr
Kerschen Nicole, Senior Researcher CNRS
Graf Marc, Dr. med., Forensic psychiatry, University
IRERP UMR CNRS N° 7029
Psychiatric Hospitals, Wilhelm-Klein-Strasse 27,
University Paris X
4025 Basel, Switzerland
200, avenue de la République
E-mail: marc.graf@upkbs.ch
92 Nanterre, France
Hadryś Tomasz, Dr., Department of Psychiatry, E-mail: nkersche@u-paris10.fr
Wroclaw Medical University, Pasteura 10, 50 367
Kiejna Andrzej, Prof. in Psychiatry, Epidemiologist,
Wroclaw, Poland
Department of Psychiatry, Wroclaw Medical Univer-
E-mail: thadrys@psych.am.wroc.pl
sity, Pasteura 10, 50 367 Wroclaw, Poland
Holmerová Iva, MUDr., Ph.D., Director and Consult- E-mail: akiejna@psych.am.wroc.pl
ant Geriatrician, Department of Management and
Kirkevold Øyvind, Research scholar, Registrated
Supervision, Faculty of Humanities, Charles Univer-
Nurse (RN), Master of Public Health (MPH), Dr. Phil.
sity Praha, Centre of Gerontology, Šimůnkova 1600,
(PhD), Norwegian Centre for Dementia Research,
18200 Praha 8, Czech Republic
Vestfold Mental Health Care Trust, Tønsberg, P.O. 64,
E-mail: iva.holmerova@gerontocentrum.cz
3107 SEM, Norway
E-mail: oyvind.kirkevold@nordemens.no
182
Krebs-Roubicek Eva, Dr. med., president of the Markowitsch Hans J., PhD, University of Bielefeld,
swiss society for geriatric psychiatry, University Department of Physiological Psychology, PF 100131,
Psychiatric Hospitals, Wilhelm-Klein-Strasse 27, 33501 Bielefeld, Germany
4025 Basel, Switzerland E-mail: hjmarkowitsch@uni-bielefeld.de
E-mail: eva.krebs-roubicek@upkbs.ch
Marksteiner Josef, Department of General Psychia-
Lawlor Brian, Prof., MB, MD, FRCPsych, Consultant try, Medical University Innsbruck, Anichstrasse 35,
Old Age Psychiatrist, Mercer’s Institute for research 6020 Innsbruck, Austria
in aging, Hospital 4, St. James’s Hospital, Dublin 8, E-mail: j.marksteiner@uibk.ac.at
Ireland
Marquez Fernando, M.D., Assoc. Prof. of Psychiatry,
E-mail: balawlor@indigo.ie
Department of Psychiatry, University of Santiago de
Legay Emilie, M.D., Centre Hospitalier Régional Compostela (USC), 15782 Santiago de Compostela,
Universitaire de Tours, 37044 Tours, France Spain
E-mail: e_legay@yahoo.tr E-mail: fernando.marquez.gallego@sergas.es
Liperoti Rosa, MD, MPH, Centro di Medicina Mateos Raimundo, M.D., PhD., Prof. of Psychiatry,
dell’Invecchiamento, Università Cattolica del Sacro Department of Psychiatry, University of Santiago de
Cuore, Largo A. Gemelli 8, 00168 Rome, Italy Compostela (USC), Coordinator of the Psychogeri-
E-mail: rossella_liperoti@rm.unicatt.it atric Unit, CHUS University Hospital, Santiago de
Compostela, Spain
Lipp Volker, Prof. Dr., Universität Göttingen,
E-mail: mrmateos@usc.es
Institut für Privat- und Prozessrecht, Lehrstuhl für
Bürgerliches Recht, Zivilprozessrecht und Rechts- O’Neill Desmond, MD FRCPI, Assoc. Prof. (Medical
vergleichung, Platz der Göttinger Sieben 6, 37073 Gerontology), Trinity Centre for Health Sciences,
Göttingen, Germany Adelaide and Meath Hospital, Dublin 24, Ireland
E-mail: lehrstuhl.lipp@jura.uni-goettingen.de E-mail: des.oneill@amnch.ie
Luanaigh Conor Ó, Dr. MB, MRCPsych, Research Olde Rikkert Marcel GM, MD, PhD, Prof. in Geriat-
Fellow and Honorary Lecturer in Old Age Psychiatry, ric Medicine, University Medical Centre Nijmegen;
Mercer’s Institute for Research in Aging, Hospital 4, Alzheimer Centre Nijmegen (UMCN), Department
St. James’s Hospital, Dublin 8, Ireland of Geriatric Medicine, University Hospital Nijmegen,
E-mail:coluanaigh@stjames.ie P.O. Box 9101, 6500 HB Nijmegen, The Netherlands
E-mail: m.olde-rikkert@ger.umcn.nl
Lundberg Catarina, Psychologist, PhD, Traffic
Medicine Center, Department of Geriatric Medicine, Provazníková Eva, DiS, Project manager, Czech
Karolinska University Hospital, 141 86 Stockholm, Alzheimer Society, Diakonie ČCE, Belgická 22, 120 00
Sweden Praha 2, Czech Republic
E-mail: catarina.lundberg@ki.se E-mail: eprov@centrum.cz
Maeck Lienhard, Dr.med., University Psychiatric Rokosová Martina, Mgr., Vice Chairperson, Czech
Hospitals, Wilhelm-Klein-Strasse 27, 4025 Basel, Alzheimer Society, Šimůnkova 1600, 18200 Praha 8,
Switzerland Czech Republic
E-mail: lienhard.maeck@upkbs.ch E-mail: martina.rokosova@gerontocentrum.cz
183
Rymaszewska Joanna, Dr, Assoc. Prof., Specialist in Tsolaki Magda, Dr, MD, PhD, Assoc. Prof. of Neurol-
Psychiatry, Department of Psychiatry, Wroclaw ogy, 3rd Department of Neurological Clinic, Hospital
Medical University, Pasteura 10, 50 367 Wroclaw, G. Papanikolaou, 570 10 Thessaloniki, Greece;
Poland Aristotle University of Thessaloniki, Greece
E-mail: jrymaszewska@psych.am.wroc.pl E-mail: tsolakim@med.auth.gr
Soto Maria E., Alzheimer’s Disease Research and Vaňková Hana, MUDr, Research Coordinator,
Clinical Center, Department of Internal Medicine Gerontologické centrum, Šimůnkově 1600, 182 00
and Geriatrics, Toulouse University Hospital France, Praha 8 – Kobylisy, Czech Republic
Service de Médecine Interne et de Gérontologie E-mail: hana.vankova@gerontocentrum.cz
Clinique, Pavillon J. P. Junod, Centre Hospitalier
Vellas Bruno, Alzheimer’s Disease Research and
Universitaire La Grave-Casselardit, 170 avenue de
Clinical Center, Department of Internal Medicine
Casselardit, TSA 40031, 31059 Toulouse cedex 9,
and Geriatrics, Toulouse University Hospital France,
France
Service de Médecine Interne et de Gérontologie
E-mail: soto-martin.me@chu-toulouse.fr
Clinique, Pavillon J. P. Junod, Centre Hospitalier
Stoppe Gabriela, Prof. Dr. med., Professor of Universitaire La Grave-Casselardit, 170 avenue de
Psychiatry, University Psychiatric Hospitals, Casselardit, TSA 40031, 31059 Toulouse cedex 9,
Wilhelm-Klein-Strasse 27, 4025 Basel, Switzerland France
E-mail: gabriela.stoppe@upkbs.ch E-mail: vellas.b@chu-toulouse.fr
Sulkava Raimo, Prof. of Geriatrics, University of Vorm Anco vd, Researcher, Department of
Kuopio, Department of Public Health and Clinical Ethics, Philosophy and History of Medicine,
Nutrition, P.O. Box 1627, 70211 Kuopio, Finland University Medical Centre Nijmegen (UMCN),
E-mail: raimo.sulkava@uku.fi 6500 HB Nijmegen, The Netherlands
E-mail: a.vandervorm@etg.umcn.nl
Tătaru Nicoleta, Dr., Senior Consultant Psychiatrist,
Forensic Hospital Ştei, Bihor, România, 36, Cuza Waldemar Gunhild, M.D. Ph.D., Professor of
Vodă Street, 410101 Oradea, România Neurology, Memory Disorders Research Group,
E-mail: nicoleta_tataru@hotmail.com Department of Neurology, Copenhagen University
Hospital, Rigshospitalet, 9 Blegdamsvej,
Tsantali Eleni, Dr, PhD Psychologist, The Greek
2100 Copenhagen, Denmark
Association of Alzheimer’s Disease and Related
E-mail: rh15740@rh.dk
Disorders, Daily Care and Research Center of
Cognitive Rehabilitation, Merkouriou 5, 54655 Wancata Johannes, Prof. Dr. med., Department of
Thessaloniki, Greece Psychiatry and Psychotherapy, Division of Social
E-mail: elentsnt@psy.auth.gr Psychiatry, Medical University of Vienna, Währinger
Gürtel 18–20, 1090 Vienna, Austria
E-mail: johannes.wancata@meduniwien.ac.at
184

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Edited by Gabriela Stoppe

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Typesetting: Composition & Design Services, Minsk, Belarus

Printed on acid-free and chlorine-free bleached paper

Library of Congress Control Number: 2007935991

ISBN 978-3-211-72368-5 SpringerWienNewYork

Prof. N. Sartorius, MD, PhD

Members of the EDCON Steering Committee

EDCON-Consensus: Assessment Chapter 7

WHY IS COMPETENCE ASSESSMENT IMPORTANT?

Lienhard Maeck and Gabriela Stoppe

1 Preface pean tendency is particularly obvious: according to a

Advance directives, also called living wills, anticipate

1 Introduction clinical assessment procedures. Neuropsychological

es of dementia a comprehensive neuropsychological adequate age-adjusted norms. It is also important to

BRAIN STRUCTURES INVOLVED IN DEMENTIA

Matthias Brand and Hans J. Markowitsch

1 Introduction 2 Structural and functional brain correlates of

Fig. 1. An AD patient’s FDG-PET showing hy-

patient groups affecting the posterior parietal cor- References

MEDICAL FACTORS INTERFERING WITH COMPETENCE IN DEMENTIA

Maria E. Soto and Bruno Vellas

1 Introduction Comprehensive Geriatric Assessment, CGA (Ruben-

DRUGS THAT AFFECT COMPETENCE

Conor O’Luanaigh and Brian Lawlor

1 Introduction (Martin et al., 2000). In addition to polypharmacy,

Fig. 1. Drugs that affect competence

Drugs that adversely effect cognition Putative mechanism

noradrenaline reuptake inhibitor with proven effica- 4.3 Dopamine agonists

WHO DECIDES WHO DECIDES? ETHICAL PERSPECTIVES

“Illness is not something a person has; it’s another way of being”

1 Introduction whether one attributes the moral precept for such a

ARE LEGAL SYSTEMS IN EUROPE FIT FOR THE DEMENTIA CHALLENGE?

1 Introduction Between April 1997 and November 2006, thirty-

Article 9 lays down the following principle: The pre-

Definition of biomedical research Fundamental principles

TESTAMENTARY AND FINANCIAL COMPETENCE ISSUES IN DEMENTIA

Konstantinos N. Fountoulakis and Katerina Despos

1 Introduction will probably be complicated. Most wills will be chal-

Basic psychiatric interview

References Lieff S, Maindonald K, Shulman K (1984) Issues in determining

ASSESSMENT OF COMPETENCY AND ADVANCE DIRECTIVES

1 Introduction This decision process, however, immediately raises

INFORMED CONSENT IN DEMENTIA RESEARCH

Anco vd Vorm and Marcel GM Olde Rikkert

To explain highly sophisticated research techniques

to consent by the available instruments, for example Therapeutic + ++

5 Way out in research practice

ASSESSMENT OF FITNESS TO DRIVE, POSSESSION OF PROFESSIONAL DRIVERS’

Kurt Johansson and Catarina Lundberg

1 Introduction ing capacity and communicate this to the driver, this

Here, the physician or the assessment team has ac- Summary

PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: AUSTRIA

Johannes Wancata and Josef Marksteiner

1 Introduction with approximately 0.5% of the population currently

PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: DENMARK

Dorthe Vennemose Buss and Gunhild Waldemar

1 Financial capacity 3 Advance directives – medical treatment

5 Consent to medical treatment