(Facts (Oxford England) ) Audrey Daisley, Rachel Tams, Udo Kischka-Head Injury-Oxford University Press (2009)

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Head injury
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Head injury
AUDREY DAISLEY
RACHEL TAMS
UDO KISCHKA
1
1
Great Clarendon Street, Oxford OX2 6DP
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While every effort has been to ensure that the contents of this book are as complete, accurate,
and up-to-date as possible at the date of writing, Oxford University Press is not able to give
any guarantee or assurance that such is the case. Readers are urged to take appropriately
qualified medical advice in all cases. The information in this book is intended to be useful to
the general reader, but should not be used as a means of self-diagnosis or for the prescription of
medication. The author and the publishers do not accept responsibility or legal liability for any
errors in the text or for the misuse or misapplication of material in this book.
Contents
Contributors vii
Acknowledgements ix
Foreword xi
Preface xiii
1 Coping with head injury: introduction and overview 1
2 How the brain works and how it is damaged 9
3 Treatment and recovery after head injury 23
4 Changes in physical functioning 43
5 Changes in thinking skills 57
6 Changes in speech, language, and communication 73
7 Changes in emotions and behaviour 83
8 Changes in sexual functioning 95
9 Family issues after head injury 103
10 Helping children cope with head injury in the family 121
11 The longer term 131
Appendices
1 Resources and further reading 147
2 Information for younger children (aged 7–10) 153
3 Information for young people (aged 11–15) 159
Glossary 165
Index 173
v
This page intentionally left blank
Contributors
Judith Allanson
Consultant in Neurorehabilitation, Community Head Injury Service,
Jansel Square, Aylesbury, Bucks
Audrey Daisley
Consultant Clinical Neuropsychologist, Oxford Centre for Enablement, Oxford
Aidan Jones
Udo Kischka
Consultant in Neurorehabilitation, Oxford Centre for Enablement, Oxford
Liz Ryan
Relationship and Psychosexual Therapist, Oxford Centre for Enablement, Oxford
Lucy Skelton
Highly Specialist Speech and Language Therapist, Oxford Centre for
Enablement, Oxford
Rachel Tams
vii
Acknowledgements
We would like to thank:
The many people with head injury and their families, who we have all worked
with over the years; learning from them has given us a real insight into the dif-
ferent experiences that families may have after head injury and allowed us to
write this book.
The contributors to this book for sharing their experience and expertise with us.
The editorial team at Oxford University Press (Oxford)—particularly
Pete Stevenson, Nicola Ulyatt, and Emma Marchant for their patience and
guidance.
Professor Derick Wade for generously offering us the opportunity to be involved
with this book.
Our families—for their support and understanding.
ix
Foreword
Persons involved in the rehabilitation of individuals who have suffered trau-
matic brain injury (TBI) or head injury (as it is commonly referred to) have
long recognized the need to educate family members about the nature of this
complicated brain disorder and the predictable physical, cognitive, and behav-
ioral (including personality) changes that are frequently observed. This book by
Daisley, Tams, and Kischka provides the most comprehensive review written
specifically for families that I have seen to date.
The text was clearly written with a United Kingdom (UK) audience in mind.
Several practical suggestions for helping family members find resources to
cope with the problems that a brain-injured loved one may present with exist
in the UK. What the authors describe as “the facts” concerning head injury,
however, can be meaningfully understood and utilized by family members
throughout the world.
This book emphasizes three points. First, family members must be knowledge-
able about their relative’s head injury, and this requires becoming aware of
multiple types of information and familiarizing themselves with new termi-
nology. Even for the experienced professional, this at times can be a daunt-
ing task, and yet these authors have gone a long way to simplify rather com-
plicated findings and relationships. While their simplification at times misses
points that professionals might wish to emphasize, their book is nevertheless
extremely readable and helps families understand in much more detail what the
world of traumatic brain injury is like. In this regard, the authors have covered
all of the major points that need to be included in educating the family and
add an often neglected topic, namely the problems associated with sexuality
after TBI. Thus, this brief text is highly comprehensive in nature. Appropriately,
the authors warn family members who utilize their book to also seek out appro-
priate trained professional advice when having specific questions over their
loved one. No textbook can cover the variety of complexities that will emerge
in a given patient.
Second, these authors discuss practical strategies for managing the cognitive,
behavioral, and physical difficulties that confront persons with traumatic brain
injury at varying levels of severity. This is extremely helpful.
Third, the authors emphasize throughout the book that family members
must “take care of themselves.” This, of course, is important advice and every
xi
Head injury · thefacts
clinician would agree with it. How this is actually done, however, is a complicat-
ed process, but it gets family members to think practically over the importance
of protecting themselves and that they are not “an unlimited resource” that can
be there 24 hours, 7 days a week to care for a person with a brain injury. When
family members can appropriately get their needs met while helping their loved
one who suffered a brain injury get their needs met, the outcome is almost
always more positive for both parties.
This text is easy to read and uses methods of teaching that greatly facilitate
providing important facts to family members. Commonly asked questions
are highlighted in each chapter and certain “facts” versus “myths” are equal-
ly identified. The glossary of terminology may be especially helpful for those
who can become confused with the variety of terms that medical and non-
medical professionals utilize when describing a person with traumatic brain
injury. Knowing what those words mean will help them begin to cope with the
inevitable changes that will impact their life forever.
George P. Prigatano, Ph.D.
xii
Preface
Coping with a head injury has been described as one of the most serious chal-
lenges that a family can face. This is partly because of its dramatic onset—head
injuries happen out of the blue, without any warning and usually in traumatic
circumstances. In addition, head injuries can lead to a wide range of problems
and have long-lasting consequences which are outside the individual’s (and their
family’s) normal experience. Therefore families can be frightened, distressed,
and bewildered by what they are observing and experiencing.
Family members often have many questions about the head injury and what
their relative is going through, and may feel isolated and unsupported. If you
are in this situation, it is important firstly to know that you are not alone—head
injury affects approximately one in 300 families at any one time in England
and Wales. There are also professionals and services dedicated to helping those
affected by head injury.
This book provides you with essential information about head injury in
adults and addresses those questions typically asked by families, guiding you
through the head injury journey, from the initial stages when the accident first
happens, through early and later treatment, and ending with a discussion of
the key long-term issues faced by all those living with head injury. While this
can be a very difficult journey to take, our experience of working with head-
injured people and their families has shown us that there are things that can
make it easier.
By following certain strategies you will better understand what your relative
is experiencing, and reduce some of the fear and uncertainty that you and
other family members may be feeling. This book provides advice on cop-
ing with the range of problems experienced (providing you with information
on managing these problems directly, as well as coping with their impact
on you), and directs you towards the different types of support services and
interventions available to family members (including children). The strate-
gies and suggestions we provide are based on extensive research findings, our
own clinical experience and, importantly, what we know has worked for other
families.
We want you to use this book in whatever way you find most useful, and to guide
your discussions with the professionals involved in your relative’s care. You do
xiii
not have to read the chapters of this book in order. Instead, it is designed so
that you can dip into any chapter at any time, allowing you to read about those
issues that are most pertinent to you at a particular time. Some sections are
written specifically for different family members (e.g. children), and details of
other resources and sources of support are given at the end of the book.
Audrey Daisley
Rachel Tams
Udo Kischka
May 2008
xiv
1
Coping with head
injury: introduction
and overview
06 Key points
◆ According to Headway (the UK’s national brain injury association)
every year around 1.4 million people in England and Wales will attend
A & E as a result of head injury:
◆ Each year over a million people attend hospital A and E in the UK fol-
lowing head injury.
◆ Around 135,000 of these will be admitted because of the severity of
their injury.
◆ It is estimated that across the UK there are around 500,000 adults
living with long term disabilities as a result of head injury.
◆ Head injury is one of the most serious challenges a family can face.
How families cope with head injury varies enormously. A wide range of
coping strategies can be used.
◆ Active coping strategies (such as seeking information and seeking support)
are more effective than strategies that involve avoidance (e.g. trying not
to think about the problems).
◆ Families require help and support to cope at all stages of their relative’s
injury, especially in the longer term when they are likely to be the main
(or only) source of support to the injured person.
Coping with stressful and traumatic life events is something that almost all
families will have to deal with at one time or another. Most of us will experience
1
the death or serious illness of a loved one, the breakdown of a relationship,

or the loss of employment, and will need to find ways to cope with the difficult
circumstances that arise from these events. Head injury has been described as
one of the most serious challenges a family will face, particularly because of its
wide-ranging and long-lasting consequences (for both the injured person and
their relatives). This book will help to guide you through the ‘maze’ of head
injury so that you feel equipped to cope with the challenges it presents.
What is coping?
In simple terms coping refers to the wide range of things that we do or think
to try to deal with the situation that we are in. While this might sound
straightforward, coping is actually a very complex process. No two people (or
two families) are likely to respond to and cope with even the same situation in
exactly the same way. Furthermore, some coping strategies are more effective or
helpful than others, or more appropriate to use at one time than another.
The types of coping strategies that we will use in a stressful situation is partly
determined by:
◆ How we normally cope with stress (i.e. we bring our previous experience
to this).
◆ How others around us cope.
◆ The amount and type of support we have.
◆ Factors related to the situation itself (e.g. the nature and severity of your
relative’s problems).
◆ The judgements and decisions (sometimes called appraisals) we make about
the stressful situation that we are facing. These appraisals are important
because they are central to helping us decide what to do next in any given
situation (i.e. what course of action, if any, we will need to take):
◆ if we judge a situation to be serious and possibly threatening to us we are
likely to take one kind of action (i.e. to protect ourselves, or to prevent
further harm)
◆ if we judge it not to be harmful to us we are likely to take a different
course of action (i.e. we may not take any action, or we might just
ignore it).
This process of appraisal and trying to work out what an event means for us is
likely to take place after head injury and can help us understand why different
people (even from the same family) might react emotionally to and cope with
similar types of head injury differently.
To complicate matters further, how we cope tends not to be a static process and
can change with time, particularly as a situation alters. Therefore, judgements
about a situation may alter (again depending on many factors, such as the
2
Chapter 1 · Coping with head injury: introduction and overview
extent of your relative’s recovery or the information you have been given) and
your reactions and coping strategies are likely to change alongside this.
Coping with head injury

Considerable research has focused on the vast range of strategies used by families
to cope with head injury. The main conclusions are:
◆ The process of coping with a relative’s head injury is constantly changing.
Because of the wide-ranging and long-lasting consequences of head injury,
families need to draw upon a varied range of strategies to deal with it; some
of these strategies might be familiar (as they may have been used previously
to manage other stressful situations), while others are new and have to be
learned.
◆ Families often find themselves shifting between different ways of coping
depending on the situation facing them, or when a strategy is no longer
helpful. Because of this families often say that that it can feel as if they never
have a ‘grip’ on a situation. However, it is also good to try many different
ways of coping.
◆ Adult relatives face the demanding task of helping other family members
(particularly children) and friends cope. This can be stressful, especially if
they are finding it difficult to cope themselves.
◆ Families tend to report less distress when they use coping strategies that
focus on active problem-solving (e.g. actively seeking out information about
issues, thinking positively, optimistically, and realistically about a situation,
and seeking support, perhaps via counselling).
◆ Strategies that involve avoidance (e.g. trying not to think about the problem,
wishing it would go away, or avoiding dealing with the issues associated with
it) have been found to be generally less helpful and can lead to higher levels
of emotional distress for relatives.
◆ Families require help and support to cope at all stages of their relative’s
injury (especially in the longer term when they are likely to be the main (or
only) source of support to the injured person). Despite this there is a ten-
dency for services to provide most support in the early and middle stages of
recovery but to withdraw in the later stages (at a point when they might be
most needed).
What helps in coping with head injury?

There are a number of useful approaches to managing many of the specific
head -injury-related problems that your relative might be experiencing. You will
find more details about these in later chapters which focus on common post-
injury problems. Whatever the type of changes you have noticed in your relative,
we know that the following general approaches are often helpful:
3
1. Become knowledgeable about head injury by seeking information and

advice.
2. Know what resources are available, and how to access them.
3. Use strategies to overcome problems. There are many ways in which post-
injury problems can be managed, ranging from using simple strategies
and aids to altering your environment.
4. Learn to look after yourself and know what forms of emotional and
practical support are available to you.
Increasing your knowledge about head injury

You may have heard people say ‘knowledge is power’, and this is certainly true
in the case of coping with head injury. Since most people have no (or little) prior
knowledge of head injury, the experience can be confusing as well as distressing.
Many relatives have told us that they feel as if they have been transported to an
alien planet—they do not know the ‘language’ of head injury, and so can feel
‘stupid’ and ill-informed and do not know what questions to ask; thus they
worry that they might come across as being uninterested or uninvolved with
their relative. Research tells us that seeking information about head injury is one
of the most useful coping strategies that families can use. Clear and up-to-date
information can help address anxieties, encourage realistic family expectations,
and promote more effective coping. Families that are better informed tend to
feel more able to cope and often have lower levels of distress. In addition, under-
standing the nature and extent of your relative’s ongoing difficulties can also
help you pinpoint particular problem areas and ensure that you are targeting
your efforts where they are most needed.
The process of obtaining information after head injury is complex, however,
and can be problematic. For example, there tend to be many professionals
involved in helping people with head injury and families typically do not
know what the different roles of all these people are—again, they do not always
know who to seek help from. This can be exhausting, as you might end up
having to ask everyone the same question before you find the information you
need, or so overwhelming that you ask no one. We try to assist with this through-
out this book by trying to explain any technical terms as we use them (but
you might also want to refer to the Glossary at the end if you need to find the
meaning of something quickly). We have also provided a ‘Who’s who’ section in
Chapter 3 to help you navigate your way through the head injury pathway and
understand the roles of those you might encounter along the way.
When seeking information, the following can help.
◆ Obtain general information about head injury: this is a good first step in
feeling as if you are taking back some control of the situation. There are
4
many excellent websites that can also provide you with general information
and facts about head injury. We list these at the end of the book but would
like to draw your attention to the Headway website at www.headway.org.uk
as it is particularly helpful. Headway, the UK’s national brain injury associa-
tion, is a charity set up to provide information and support to people affected
by all kinds of brain injury, including head injury. A network of local branches
and groups exist throughout the UK offering a wide range of services. There
are local variations in what Headway can provide and some of the services
we make reference to may not be available in your area. However, Headway
have a national helpline number (details provided in back of book). You can
use this to gain general information and find out what is available in your
area.
◆ Use this general information to help you seek more detailed and personalized
information about your relative’s head injury and its consequences. Not
everyone with a head injury will experience all the problems and issues we
go on to describe, and some will experience the same types of problems in
different ways and to different extents. Therefore it is helpful to be able to ask
very specific questions about your relative’s particular patterns of difficulties.
With this more detailed information (that is, importantly, tailored to your
relative) you will be able to build up a much clearer picture of your relative’s
strengths and weaknesses, as well as ways to help them. Obtaining this infor-
mation, being clear about what it means, and remembering it (especially if
you are under stress) can be difficult.
If your relative is fully aware of their difficulties (after head injury this may not
always be the case), a good starting point is to talk to them and get their per-
spective on the problems.
Alternatively, talking to the doctor or other health care professionals
involved in your relative’s care may help you understand what is going on. Make
specific time with professionals to have your questions answered, and ask them
to write down the key points that have been discussed. Staff members are likely
to be busy and you may feel uncomfortable asking for very detailed informa-
tion; however, doing so will increase the likelihood that you will both under-
stand it and remember it, and so it is likely to be beneficial to you, especially in
helping reduce any distress and confusion. It will also save time for staff in the
long run.
It is important to take time to absorb the information you have been given and
follow up on any issues of concern. It is helpful to write down any questions
arising from the initial information you were given, to make time to seek the
additional information you require, and to ask for other sources of information
(as and when you feel ready to take more on board). The quality, timing,
amount, and usefulness of information given to families about head injury
varies significantly across services. Therefore it is important to take a proactive
5
approach to seeking the information you need for you and your family, at all
stages in your relative’s recovery. Be persistent if your questions are not answered
adequately.
Become aware of what resources are available

We have already referred above to Headway, the UK’s national head injury
organization. Your relative’s doctor or Headway should be able to provide you
with information on the specialist support available locally, such as organizations
and support groups that you and your relative can access. You might also be
able to access specialist rehabilitation services and professionals if they exist
in your area. Important contact details are provided at the end of this book.
Use strategies to overcome problems and find ways around your

relative’s difficulties
As you will read in this book (and as you may already be aware from your own
personal experience), many individuals after head injury continue to experience
its consequences in everyday life. In the longer term (e.g. once your relative
leaves hospital), it is important to find ways around any ongoing problems in
order to reduce everyday stress levels within the family. If your relative is access-
ing support from rehabilitation services, their therapists will be able to advise
you on the strategies best suited to your relative’s problems. There are also a
number of things that you can do to minimize the problems encountered—
helping to ensure that your relative is as independent and safe as possible. These
general strategies include:
◆ making simple changes to your home or your relative’s work environment
(such as labelling drawers, and reducing noise and other distractions)
◆ drawing on your relative’s particular pattern of strengths
◆ having a clear routine to the day
◆ using simple aids (e.g. written reminders, alarms, diaries, to-do lists).
These can all help your relative and reduce the stress you may all be feeling.
Finding ways round ongoing difficulties (sometimes called compensation

by rehabilitation professionals) is usually much more effective than search-
ing or working towards a cure or complete recovery.
Some families worry that compensating for the problems (e.g. using a diary to
get around memory problems, or using pictures to help your relative communi-
cate) will hinder recovery in some way. We want to reassure you that using aids
and making changes to your environment will not hamper your relative’s recov-
ery at all.
6
The many existing resources (leaflets, books, websites) can provide you with
practical advice to help deal with the common problems seen after head injury.
These will provide a good starting point, but the ideas suggested may need
adapting for your relative’s specific pattern of difficulties; there is no ‘one size
fits all’ approach. You and your relative will need to try different things out and
see what works best for you and your family. In some cases (e.g. if the problems
are complex or difficult to understand) you may need more specialist assessment
and advice.
Looking after yourself

Head injury is stressful and challenging not only for the individual directly
affected but also for other family members. In order to deal effectively with the
problems that can arise from your relative’s head injury it is important to look
after yourself and to know what support is out there for you. This is explored
fully in Chapter 9.
7
2
How the brain works
and how it is damaged
06 Key points
◆ Different parts of the brain are specialized in performing certain
functions, e.g. moving an arm, speaking, and remembering.
◆ Following a head injury, one or more of these functions can be
selectively impaired, depending on which parts of the brain are the
worst affected.
◆ Certain parts of the brain are more vulnerable to damage after a head
injury than others and give rise to typical patterns of difficulties.
◆ The brain has the ability to recover to some extent after a head injury
because undamaged parts of the brain can take over lost functions of
the damaged parts. This is called plasticity.
It is much easier to cope with things that we understand. However, the effects
of head injuries can be difficult to understand because the brain is such a highly
complex organ. As stated in the four principles in Chapter 1, becoming knowl-
edgeable about how the brain works and how it is typically damaged after a
head injury is an important first step in understanding your relative’s particular
difficulties.
The brain
Functions of the brain
The brain is the highest command centre of all the functions of our body:
◆ it directs all our actions, such as walking up stairs, typing on a computer
keyboard, and talking to a friend
◆ it governs our thoughts and feelings
◆ it regulates our vital functions (the beating of the heart, breathing, and
temperature control) and our hormones.
9
Different parts of the brain are specialized to perform certain functions: some
parts of the brain are in charge of moving an arm, others are responsible
for speaking, and others again are active when you remember something.
The various parts of the brain have to work together in a highly coordinated
way to produce the desired action. For instance, when you talk to someone
on the telephone, your ears turn the sounds into electrical signals which are
transported to one part of the brain which recognizes them as speech rather
than other sounds (such as music or the barking of a dog), and then they are
passed on to another part which makes sense of what was said to you. This
information is then relayed to yet another part of the brain which forms your
answer in your mind, and this activates another area of your brain that controls
the muscles you use for forming the words. When you talk to someone face to
face, it becomes even more complicated, with all the information from the eyes
and the other senses to take in simultaneously. Now imagine driving a car at
the same time.
Parts of the brain

The brain weighs about 3 pounds and is an organ of rather soft consistency (a bit
like a firm jelly); as such, it is quite a vulnerable structure and can easily be
damaged. For protection it is surrounded by the bony skull. Between the brain
and the skull are three skin-like membranes and a thin layer called cerebrospi-
nal fluid (CSF) between these membranes which provide some additional pro-
tection to the brain. The CSF is formed within chambers in the brain called
ventricles. The brain requires a steady supply of oxygen, glucose, and other sub-
stances in the bloodstream to maintain its functioning. The brain has several
different parts (Figure 2.1).
The brainstem (at the base of the skull) contains the hypothalamus, which
controls our breathing, heart beat, hormones, and wakefulness. Therefore it is
in charge of the body’s most vital functions: we can survive damage to the other
parts of the brain, but serious damage to the brainstem often leads to coma or
death. The brainstem connects the brain to the spinal cord, and it is also
involved in moving the muscles of our face and throat.
The cerebellum is attached to the back of the brainstem. It plays a role in
coordinating our movements, ensuring that the movements of our arms and legs
are smooth and precise. It is also involved in keeping our balance while sitting,
standing, and walking.
The cerebrum is the largest part of the human brain. It has two nearly sym-
metrical halves called the right and left hemispheres. The left hemisphere
controls the right side of your body, and the right hemisphere controls the left
side of the body. This means that an injury to one side of the brain causes
weakness and reduced feeling on the opposite side of the body. In most people,
the left hemisphere is responsible for controlling the ability to speak and to
understand speech, whereas the right hemisphere helps us to appreciate music
10
Chapter 2 · How the brain works and how it is damaged
reasoning motor
problem solving sensory
PARIETAL
FRONTAL LOBE LOBE
personality
speech
emotions
language
hearing
OCCIPITAL
TEMPORAL LOBE
LOBE
vision
memory
CEREBELLUM
controls balance
and coordination
BRAINSTEM
regulates basic
body functions
Figure 2.1 The brain
and art. Deep within the hemispheres lie the basal ganglia which are involved
in performing movements. The surface of the cerebrum is covered by the
cortex, which has the outward appearance of a series of ridges and troughs.
The cortex is involved in intellectual functioning—it is the part of the brain
with which we think, remember, and speak. It also controls our sensations
and feelings, and the motor cortex controls our voluntary movements. The
cortex contains billions of neurons or nerve cells, the ‘little grey cells’ of
Hercule Poirot.
The nerve cells or neurons within the brain are connected to other neurons by
axons (like long fibres) and dendrites (like branches of a tree), through which
they communicate with each other. They use electrical and chemical impulses
to send messages very rapidly from one part of the brain to other parts of the
brain and back. The ‘grey matter’ of the brain refers to the cortex and some
parts deep inside the brain containing neurons, and the ‘white matter’ to those
parts that consist of the fibre connections. The neurons also send messages
through the spinal cord to other parts of the body. For instance, some neurons
activate muscles. Unfortunately, neurons in the brain are quite fragile and can
easily be damaged.
The brain and the spinal cord make up our central nervous system (CNS).
11
Each hemisphere of the brain has four lobes. Each lobe has its own primary
function as well as having to work with other parts of the brain to carry out
functions.
The occipital lobes are situated at the back of our brain. Everything we see is
transformed into electrical impulses in the eyes and transported through the
optic nerves and further back to the occipital lobes, which ‘make sense’ of the
incoming information. They turn these electrical impulses into our impression
of seeing, for example, the sky, a house, or a person.
The parietal lobes are located at the top of the brain. They are involved in
a wide range of functions including feeling of touch and pain, carrying out
arithmetic, focusing our attention, and orientating ourselves in a building or
town (i.e. knowing where we are). They are also responsible for integrating
information from different senses, for example when we look at a nice hot cup
of coffee which we feel in our hand, smell its aroma, and taste it.
The temporal lobes are located at the sides of the brain. The information from
our ears is passed on to the temporal lobes, which create our experience of
hearing. When we listen to someone talking, the left temporal lobe becomes
active and makes sense of what is being said. Furthermore, we use the temporal
lobes to store our memories.
The frontal lobes are the part of the brain just behind our forehead. They
are in charge of our higher-level thinking skills (such as problem-solving and
organizing what we do), and initiating and planning our movements and actions.
The left frontal lobe is necessary for speaking. The frontal lobes control our
emotions and impulses, making sure our behaviour is appropriate to the situation
we are in. They also assist us in dealing with new or unexpected situations. The
rest of the brain does things pretty much automatically. Imagine, for example,
the times that you have driven home from work and when you arrived, you did
not remember how you got there. This is because we can do many things, even
complex tasks such as driving a car through dense traffic, without really being
aware of what we are doing, as if we were on autopilot. Imagine your brain as an
aeroplane which gets you from London to New York on autopilot, but during
take-off and landing the captain takes over and makes all the decisions. The
frontal lobes are like the captain.
Certain parts of the brain work together to produce what we experience as
emotions or feelings. These are known as the limbic system. Parts of the frontal
lobes belong to the limbic system, as does the amygdala, a cluster of nerve cells
in the temporal lobes. The limbic system will be mentioned later when we talk
about the emotional consequences of a head injury.
We are not usually aware of how well the brain works until something goes
wrong. When someone has a head injury with damage to the brain, one or more
of the brain functions mentioned above can be selectively impaired, depending
on which parts of the brain were the worst affected.
12
What happens in a head injury?

Many people will suffer a head injury at some point in their life, but fortunately
in the vast majority it will only be a minor injury. It has been estimated that
around one in six people with a head injury requires hospital treatment. In Great
Britain, 200–250 people per 100 000 are admitted to hospital with a head injury
every year. This means that in a city such as Birmingham with a population of
a million, there are 2000–2500 hospital admissions with head injury per year.
Young men are much more frequently affected than any other group, although
young children and the elderly are also at risk.
Causes of head injury

Road traffic accidents (about 45 per cent)
Falls (about 30 per cent)
Accidents at work (about 10 per cent)
Accidents during recreation/sport (about 10 per cent)
Assaults (about 5 per cent)
An injury to the brain can cause a wide variety of symptoms, affecting all areas
of our abilities, our experiences, our personality, and our bodily functions.
Certain parts of the brain are specialized and are in charge of different functions.
If a person has an injury that is limited to just one small part of the brain, he/she
may have a very specific problem such as loss of movement in one arm, whereas
other functions such as memory and speech can be well preserved (and vice
versa). Unfortunately, the very nature of a head injury means that usually the
whole brain has been shaken around within the skull. Therefore many parts of
the brain are affected to some extent, some more and some less.
How does the brain become damaged

in a head injury?
Although the skull and fluid surrounding the brain provide some protection to
it during everyday movements, they are insufficient to protect it against large
forces. Ironically, the bony skull, despite being there to protect the brain, can
add to the damage because it encloses the brain so tightly. When the head is hit
from the outside, the brain is thrown around inside the skull with great force.
The resulting damage depends on the speed and the direction of the impact,
and the location of the injury on the head and in the brain. We will see that
some parts of the brain are injured more frequently than others. Additional
complications can occur some time after the initial head injury (hours or even
13
days later). These delayed effects can also determine the outcome. A head injury
has three phases:
◆ First injury: the initial impact (or damage) which usually occurs within a
few seconds.
◆ Second injury: this is determined by the medical condition of the victim in
the next few minutes or hours.
◆ Third injury: the consequences of the initial trauma on the person’s brain
and body over the next days and weeks.
First injury
There are three different types of first injury.
◆ Closed head injury, in which the skull is not penetrated, is the most common
head injury. It can happen by acceleration, deceleration, or rotation of the
brain within the skull.
◆ An acceleration injury occurs when the head is at rest and is suddenly
thrown back or forwards, for instance when hit by a fist.
◆ Deceleration injuries typically occur in car crashes, when the head is in
motion and suddenly hits an obstacle such as a steering wheel.
◆ A rotation injury occurs when the head is suddenly turned around
very fast.
Unfortunately, closed head injury does not mean that the injury is not so
bad; even closed head injuries can be associated with severe and extensive
damage to the brain.
◆ Penetrating (or open) head injury occurs when a bullet, a brick, or
another object fractures the skull and enters it, and damages the brain
directly.
◆ Crushing injury occurs when the head is compressed from two sides, for
instance between a car and a wall.
The damage to the brain during the first injury is called traumatic brain
injury (TBI), or sometimes acquired brain injury (ABI). Damage is usually
due to one or more of the following three mechanisms.
◆ Contusion (bruising of the brain): cells of the brain are crushed and
destroyed when they are thrown against the inside of the skull. This is usually
worst in the brain areas just under the skull at the site where the blow
occurred. In addition to the initial contusion at the site of impact, the brain
is often also injured at the opposite side as it keeps wobbling back and forth.
This is called a contrecoup injury.
◆ Diffuse axonal injury: tearing and shearing forces exert their effect
throughout the whole brain as it is thrown around inside the skull. The long
axons which serve as connections between nerve cells in different parts of
the brain are particularly vulnerable to these types of force and they too can
14
be torn and stretched. As this type of damage occurs throughout the brain
(and not just in one place), many brain functions can be disrupted to some
extent. This is called diffuse axonal injury, and can result in both lasting and
temporary brain damage, coma, or death.
◆ Haematoma (bleeding caused by rupturing and tearing of blood vessels):
bleeding in the brain is quite common after head injury, as arteries running
throughout the brain can be ruptured (torn) during this process. This can
occur within the brain matter (intracerebral haematoma), or between the
brain surface and the skull (subdural haematoma or extradural hae-
matoma). The bleeding exerts pressure on the surrounding parts of the
brain, crushing and destroying brain cells in the process.
Second injury
In the minutes and hours after the initial head injury, the medical condition of
the injured person may be compromised: the airways may be blocked with
blood, so that the brain and the rest of the body do not get enough oxygen. The
brain needs a constant supply of blood as this carries oxygen and glucose to the
brain cells. If there is blood loss, it can cause a serious drop in blood pressure
(shock), which also reduces the availability of oxygen and nutrients to the brain.
Without oxygen and nutrients, the brain cells cannot function properly and,
in time, some of them will die.
Third injury
The head injury triggers processes in and around the brain which can make the
situation even worse over the following days and weeks. The most common later
problems are oedema, haematoma, meningitis/encephalitis, and hydro-
cephalus. All of these can be life threatening.
Oedema (swelling of the brain)
Most of our body tissue swells when it is damaged, and the brain is no excep-
tion. As the brain swells it has nowhere to expand and so it pushes against the
skull which can cause further damage. This leads to an increase in the pressure
inside the skull (because the space available for expansion of the brain within
the skull is limited). The resulting raised pressure (intracranial pressure
(ICP)) on the brain cells damages them further. The high pressure may also
compress arteries in the brain, cutting off some parts of the brain from their
blood supply and thus causing strokes and even more damage. In severe cases,
the pressure can be such that the lower parts of the brain swell and start to push
downwards through the only opening in the floor of the skull, thereby com-
pressing the brainstem. This can lead to death.
Haematoma (bleeding)
If a bleed in the brain has occurred but stops, the blood will be reabsorbed by the
body’s normal cleaning-up mechanisms. However, in some cases the bleeding
15
continues to increase over days and weeks. This happens mostly with bleeds that
develop between the brain and skull (subdural or extradural haematomas). The
bleeding presses on the surrounding parts of the brain, crushing and destroying
brain cells.
Meningitis and encephalitis
◆ Meningitis is an inflammation of the membranes around the brain.
◆ Encephalitis is an inflammation of parts of the brain itself.
These are frequent complications after penetrating injury, whereby bacteria
from the outside world gain direct access to the brain. The inflammation
destroys brain cells and makes the brain swell. The consequence of the swelling
is the same as that described for oedema.
Hydrocephalus
Normally the CSF that is formed within the ventricles of the brain is reabsorbed.
Because of the limited space within the skull, this is usually a finely balanced
mechanism whereby the amount of CSF produced is identical to the amount
that is reabsorbed. After a head injury the mechanism sometimes malfunctions,
and the result is increasing pressure within the ventricles, which is called hydro-
cephalus. The delicate brain cells cannot tolerate the increasing pressure very
well and start dying. This situation is not unlike the brain oedema, and it is also
life-threatening.
Accompanying injuries
Often the brain is not the only part of the head, or indeed the body, that is affected.
Injuries of the eyes and face, hearing loss, broken teeth, and fractures of the skull
are common. If the skull has been fractured, CSF can leak out (recognized by
fluid running out of the nose or the ear). Other parts of the body can be injured
simultaneously with the head injury, such as the spine, arms, and legs, and also
the thorax, pelvis, and abdomen including internal organs such as the lungs and
kidneys.
There are instances when the injuries to other parts of the body are so severe
that the head injury is not noticed initially.
Early clinical symptoms after head injury

Reduced level of consciousness, which is mainly due to widespread damage
with diffuse axonal injury throughout the brain, is the most common symptom
in the early stages after head injury. The reduction in consciousness can vary
greatly: a person with mild reduction of consciousness is awake and talking, but
may not know what day it is, a person with more severely reduced conscious-
ness is sleepy and hardly speaks, and a person who remains fully unconscious
and unrousable is in a coma.
16
The level of consciousness is a good indicator of how severe your relative’s

head injury was. The most widely used method to measure the level of con-
sciousness is the Glasgow Coma Scale (GCS). It is often used by ambulance
personnel and by doctors and nurses in Accident & Emergency (A&E)
departments. The injured person is given a score for each of three criteria
(Table 2.1).
Somebody who is awake and orientated and talks coherently has a full GCS
score of 15, whereas a person who is completely unresponsive is considered as
being in deepest coma and has a score of 3. Most people who have had a head
injury have some level of reduced consciousness, at least in the early stages.
Therefore most have a GCS score somewhere between 3 and 15 immediately
after the accident. The reduced consciousness improves quickly if the head
injury has been mild, but takes longer to recover with more severe head injury.
A person with reduced consciousness requires intensive supervision and treatment
in hospital (see Chapter 3).
Table 2.1 The Glasgow Coma Scale

Response Score
Eye opening
Opens eyes on his/her own 4
Opens eyes when asked loudly 3
Opens eyes to pain 2
Does not open eyes 1
Verbal response
Talks normally, fully orientated 5
Confused or disorientated 4
Speaks words but makes no sense 3
Makes sounds, no words 2
Makes no sound 1
Motor response
Follows instructions 6
Pulls examiner’s hand away when hurt 5
Pulls own body part away when hurt 4
Bending of arm when hurt 3
Abnormal extension (straightening) when hurt 2
No motor response to pain 1
17
In addition to the GCS, there are other ways to estimate the severity of a person’s
head injury, in particular the length of time the person is unconscious for, and
the length of post-traumatic amnesia (PTA).
In the very early stages of recovery, it is common for individuals to experience
PTA, a time of confusion in which they are not fully orientated to their
surroundings and what is happening to them, and are unable to take in new
information. You may notice during the early days in hospital that your relative
finds it difficult to remember everyday events such as family visits. They
may not recognize you or other family members and friends, and they might
behave in ways that are upsetting to see, for example becoming agitated or
aggressive towards others or wandering about the ward. All these behaviours
are common at this stage. PTA typically resolves rapidly in the case of mild
head injuries (e.g. minutes or hours, rather than days) and your relative should
quickly come out of this, becoming more settled in his/her behaviour and
more aware of where he/she is. It can last longer in the cases of more moderate
to severe head injuries (e.g. days or weeks). For example, if your relative
does not remember the accident itself, and the first memory afterwards is
the ambulance arriving at the scene, the PTA is probably something like
20–30 minutes. If your relative does not remember anything apart from patchy
snippets until he/she was transferred to a rehabilitation centre 3 weeks later,
then his/her PTA is 3 weeks. In most cases, this state will improve, but unfortu-
nately, in the case of some severe head injuries, an individual may continue to
experience ongoing difficulties and disorientation in everyday life. It can be
difficult in such cases to measure the length of time in PTA accurately and to
say when this stops (i.e. when the difficulties are judged to be long term and not
part of this temporary phase of recovery). The doctors and medical team at the
hospital may be able to tell you more about this and give advice on managing
these difficulties.
The classification of head injuries into categories of severity is shown in Table 2.2
There is a large range of possible levels of severity of a head injury, and hospital
staff tend to use the terms mild, moderate, severe, and very severe when talking
about the severity of the injury.
Table 2.2 Severity of head injury according to GCS, length of unconsciousness,

and PTA
Severity GCS score Length of unconsciousness PTA
Mild 13–15 Less than 5 min Less than 1 hr
Moderate 9–12 15 min–6 hrs 1–24 hrs
Severe 3–8 6–48 hrs 2–7 days
Very severe Not applicable More than 48 hrs More than 1 week
18
Early after the accident, the GCS score gives us a rough estimate of the severity
of a head injury. However, the prediction of the final outcome depends partly
on how fast the person recovers from the state of reduced consciousness and
from the PTA (which are both useful further indicators of the person’s chances
of making a good recovery). However, we will only know the length of the
unconsciousness and the PTA when they are over.
Longer-term symptoms seen after head injury

Once the brain starts to recover, and your relative begins to wake up and become
more responsive, it becomes apparent what brain functions he/she has particular
problems with, and what he/she can still do well.
The frontal areas of the brain and the temporal lobes are particularly vulnerable
in a head injury. This means that the brain functions typically affected after
head injury include memory, higher-level thinking skills, such as planning,
organization, and problem-solving, and attention. Behaviour and emotional
control and expression can also be affected. Because of diffuse axonal injury,
thinking speed is often slowed down (as the nerve fibres normally convey infor-
mation quickly between different areas). In addition to such widespread
damage, there can also be additional discrete areas of damage after head injury
Table 2.3 Longer-term difficulties after head injuries

Areas vulnerable to Normal function Examples of resulting
damage difficulties
Frontal lobes Problem-solving, initiating and Behavioural difficulties
planning activities, controlling Lost initiative/insight
aspects of behaviour Planning problems
Temporal lobes Hearing, understanding language, Language difficulty
memory Memory problems
Parietal lobes Feeling of touch and pain, Attention problems
arithmetic, focusing attention, Orientation difficulties
orientating oneself, integrating
information from different senses
Occipital lobes Processing what is seen Visual difficulties
Nerve pathways Communicating messages Slower thinking speed
throughout the brain rapidly between different brain Slower reaction times
areas, and between the brain
and body
Brainstem Breathing, heart beat, wakefulness, Difficulty swallowing
moving the muscles of the face Slurred speech
and throat Double vision
Reduced consciousness
19
(e.g. if an artery is torn) and the individual may show specific difficulties on the
basis of this, such as loss of speech or weakness of an arm.
Table 2.3 summarizes some of the key difficulties seen, depending on which
part of the brain has been damaged. We will discuss these in more detail in
Chapters 4–8, together with ways in which they can be managed.
Prognosis: what will the outcome be?

Questions about prognosis (i.e. the likelihood and extent of recovery from the
head injury) are understandably those most frequently asked by families, and
unfortunately are probably the hardest for head injury staff to answer. The
severity of the head injury is probably the best determinant of the prognosis,
although other factors, such as the location of the injury in the brain, are also
important. These will be discussed further in Chapter 3.
Prognosis in mild head injury

The majority (i.e. approximately 85%) of head injuries are classified as mild or
moderate, as the initial injury appears minor and they have little or no loss of
consciousness. People with a mild head injury usually make a good recovery
and can resume ‘normal’ life within a very short time, often without any resid-
ual problems. However, there are a small number of people classed as having a
‘mild’ head injury who go on to experience significant and often long-lasting
problems. This condition is sometimes referred to as post-concussion syn-
drome, and typically includes:
◆ headache
◆ dizziness
◆ concentration problems
◆ forgetfulness
◆ mental and physical fatigue
◆ irritability.
Recovery from this can be problematic and lengthy, and the person may benefit
from advice on rehabilitation. The key message from this is that for some people
a ‘mild’ head injury is not always synonymous with ‘mild’ problems.
Prognosis in moderate head injury

Approximately 10% of head injuries are classed as moderate, and these patients
may require a short hospital stay before being discharged home. Recovery after
moderate head injury is usually good, with most people resuming normal life
within 6–12 months. However, as with mild injuries, a small number of people
with moderate head injuries will experience ongoing problems and may not have
resumed all daily activities within a year.
20
Prognosis after severe head injury

Around 5% of head injuries are referred to as severe or very severe. These
patients are likely to require lengthy hospital stays and input from a wide range
of professionals. The relatives of people with severe head injury are told to
‘expect the worst’, even if their relative survives, and have to prepare themselves
for long-term problems.
Unfortunately, in a small number of cases after very severe injury the individual
remains unresponsive for longer periods of time. They may be unaware of
their surroundings or, in some cases, the brain may cease to function completely
(a state called brain death). We will begin by looking at these worst-case
scenarios.
◆ Brain death In a small number of patients, the injuries to the brain are so
severe that they are not compatible with life. The swelling of the brain crushes
the neurons, and the arteries are unable to transport sufficient blood through
the brain. If there is clinical suspicion that the brain has ceased to function,
specially trained medical staff perform a series of standardized tests to ensure
that there are no reflexes that require brain function. They include widely
dilated pupils that do not narrow when a light is shone into the person’s eye,
and a lack of effort to breathe when the ventilator is disconnected. If there
is repeatedly no response on these tests, the patient is declared brain dead.
The medical staff may then ask the family for permission to turn off the life-
support systems. It is very important to ensure that any questions you have
are discussed fully and all concerns are raised. It is appropriate for you to
take all the time you need to reach a decision about ending your relative’s life
support and for you to ask for a second opinion (visit www.waiting.com for
further information and advice).
Some patients make only a slight recovery once they come out of coma
after severe or very severe head injury, and their state may turn into conditions
called vegetative state or minimally responsive state. These states are described
below:
◆ Vegetative state A small number of patients who have had a particularly
severe head injury will remain unresponsive for a longer time. This is called
the vegetative state. In this state, the patient has no awareness of what is
happening to them or what is going on in the environment around them, but
the body still keeps the heart beating and often the breathing going, and a
kind of sleep–wake cycle develops. The injured person’s basic reflexes con-
tinue to function, such as moving a limb to painful stimulation, coughing
when a suctioning tube is inserted through the tracheostomy, or even appear-
ing to look around the room. It is understandably difficult for relatives to
accept that their loved one who shows these reactions is, in fact, unaware of
their presence, particularly, as many of these brain reflexes (such as looking
towards someone or reaching out) can appear like meaningful movements.
21
Because of this, various standardized observations have been produced to

try and clarify whether there is any evidence that the head-injured person is
aware of their surroundings in any way and to monitor any possible changes
in their levels of awareness. These tests need to be carried out by staff who
are trained to use them, and so hopefully can provide a much more objective
picture of your relative’s state at any one time. If it is not possible for these
special tests and observations to be carried out by the local team looking after
your relative, they may be referred to more specialized rehabilitation profes-
sionals for further advice and assessment. If this state persists for more than
a month, it is called persistent vegetative state; if it lasts longer than 12
months, it is called permanent vegetative state. The longer-term care of these
patients is discussed in Chapter 3.
◆ Minimally responsive state People who appear to have some, but little
and fleeting, awareness of what is going on around them may be described as
being minimally aware or in a low-responsiveness state. They are not in a
coma but neither are they fully alert. It is not possible to predict who
will improve beyond this state and who will remain minimally aware. Issues
relating to communication with people with severe head injury are discussed
in Chapter 6.
The states described above are fairly uncommon, and in the majority of cases
(even after severe head injury) further recovery is expected.
However, if the patient survives the first few days, it is usually impossible to predict
within the first weeks to what extent they will recover. The good news is that
even patients with severe head injury often make some progress, particularly
if they have access to specialist rehabilitation services.
Further recovery
Fortunately, the brain has some capacity to repair the damage that happened,
and undamaged parts of the brain can, in time, take over some of the functions of
the damaged parts of the brain. This ability is called brain plasticity. In addition,
people with head injury and their families can learn new and creative ways of
overcoming problems so that the effects of their difficulties are minimized as
much as possible.
22
3
Treatment and recovery
after head injury
06 Key points
◆ Each head injury is different, so each recovery is different.
◆ There is marked variation in the path that people will follow after their
injury, depending on the severity of the injury, the nature of the prob-
lems they are dealing with, and the availability of rehabilitation and
treatment facilities where they live.
◆ It is difficult to predict accurately the amount of recovery that will occur
after head injury. Factors influencing recovery include severity of the
head injury, age, and general health.
Every head injury is different and so each family’s experience after the head
injury occurs will also be unique. As a result there are many possible outcomes
and pathways that an individual (and their family) may take following a head
injury (Figure 3.1).
Despite this variation, there are national guidelines in the UK on the type and
standards of hospital care that people with head injuries should receive (at the
time of writing the most recent of these are the NICE guidelines 2007). In this
chapter we outline the most common routes through head injury treatment and
recovery, detailing what to expect and the key issues that occur at each stage.
However, it is important to acknowledge that as the services available to assess,
treat, and support people after head injury in the UK vary enormously, your
relative may not be able to access (or need) everything that is described here.
Whatever pathway you follow, it is likely to be the most difficult journey you will
ever take with your relative. You may find it bewildering at times, as well as
physically and emotionally demanding.
Who’s who in head injury treatment and care?

Following your relative’s head injury it is almost inevitable that you will be
exposed to a startling range and number of professionals who all have a specific
23
24

ACUTE PHASE / HOSPITAL TREATMENT POST-ACUTE PHASE
Home (with
Emergency Rehabilitation
further input–
Treatment Hospital: Hospital: Hospital: Centre
Injury e.g. outpatient/
(e.g. A&E ICU Open ward (inpatient
community
Paramedics) rehabilitation)
rehabilitation)
Home (with or Home (with

GP without input no input)
from
rehabilitation
services)
Specialist
Placement
Nursing/
Residential
Home
Figure 3.1 Overview of the journey/pathway

Chapter 3 · Treatment and recovery after head injury
role in managing your relative’s early treatment and rehabilitation, throughout

all stages of recovery. This can be confusing, especially as there often seems to
be a lot of overlap and similarities in the work undertaken by professionals.
Most professionals work within head injury teams, either in rehabilitation
units or in community clinics. They may see you and your relative at home, on
a ward, or in clinics. The availability of these therapists and the amount
and type of help they can offer will depend on the type of problems your relative
has and where you live. The people you might typically encounter are listed in
Table 3.1.
Table 3.1 Who’s who in head injury care?

Anaesthetists Specialize in putting patients under anaesthesia, mainly to
prepare them for surgery, but sometimes also to calm them
down
Clinical Psychologists who have trained in health care issues with
neuropsychologists further specialism in neurological illness and injury. They can
assess and treat the cognitive, behavioural, and emotional
problems following head injury. They can also provide advice
and support to family members. (see www.bps.org.uk)
Consultants in neuro- Specialize in care after the acute stages of illness/injury
rehabilitation (doctor) affecting the brain and/or nervous system. They focus on
injured people’s needs for ongoing treatment and therapy and
often coordinate this work
Counsellors Specialize in listening and counselling skills. They can offer
emotional support at all stages of the recovery process (see
www.babcp.org.uk)
Disability employment Work within the Civil Service and are usually based in job
advisors (DEAs) centres. They can offer specialist advice on all issues related to
returning to work after illness or injury
Dietician Experts in the feeding and nutrition of people after illness or
injury
General practitioner (GP) Your usual doctor at your local surgery or health centre. They
can refer head-injured people to community- and hospital-
based services and may be the key professional involved with
people who are not being seen by rehabilitation services
Headway staff Headway provide a range of day care and support workers
throughout the country. They offer long-term support to
injured people and their families, often long after professional
support ends (visit www.Headway.org.uk)
Neurologists Specialize in the care of patients with injury or illness of the
brain, nervous system, and muscles (such as head injury,
stroke, and brain tumour)
25
Table 3.1 Who’s who in head injury care? (continued)

Neurosurgeons Doctors who specialize in surgery involving the brain and
nervous system. They use the title Mr or Ms, not Dr
Occupational therapists Health professionals who specialize in helping people with
(OTs) head injury to achieve their maximum level of independence
in all aspects of daily life including self-care, work, and leisure
activities. They play a key role in assessing and giving advice
about specialist equipment (e.g. wheelchair, stair rails) and
other adaptations to the home
Orthopaedic surgeons Doctors who specialize in disease and injury to bones. They
can be involved with people who have sustained physical
injuries to their limbs or back in their accident. They use the
title Mr or Ms, not Dr
Orthoptists Health professionals who specialize in assessing and treating
disorders of the eye and vision. They assess how the eyes work
together (binocular vision) and can give advice and aid to
manage difficulties that can occur after head injury
Paramedics Health professionals who are trained to provide acute,
sometimes life-saving, help at the site of an accident
Physiotherapists (PTs) Health professionals trained to help injured people regain
and maintain maximum functioning of the body (joints and
limbs) through movement and exercise
Psychiatrists Doctors trained in mental health and emotional issues. Head
injury teams may also include neuropsychiatrists (psychiatrists
who have particular expertise in problems that occur with
neurological illness, such as behavioural problems)
Radiologists Specialize in performing and interpreting X-rays, CT scans,
MRI scans, and similar examination techniques
Rehabilitation nurses Nurses who are specially trained in the direct care and
rehabilitation of people with head injury
Social workers/care Undertake a wide range of activities with injured people
managers and their families and are important when planning
discharge home from hospital. They can help arrange
carers, access funding, and provide emotional and practical
support. Individuals who are pursuing a legal claim against
a third party in respect of their injury may have an
independent case/care manager appointed; they typically
take on a coordinating role, and oversee and monitor the
rehabilitation interventions that are taking place. They can
sometimes arrange private funding for aids/therapies not
readily available via the NHS
26
Table 3.1 Who’s who in head injury care? (continued)

Solicitors Legal experts who may be involved when seeking
compensation after injury caused by a third party. Headway
can provide a list of personal injury solicitors who deal with
head injury
Speech and language Health professionals who specialize in the assessment and
therapists (SALTs) treatment of people with speech and language problems.
They aim to help improve speech and language and/or to find
alternative ways of communicating after head injury. They are
also experts in problems with swallowing
Trauma surgeons Doctors who are likely to see head-injured people first in A&E
units. They are experts in the acute immediate care of injured
people and will also arrange for patients to be transferred to
the next stage of treatment as appropriate. They use the title
Mr or Ms, not Dr
Medical teams are led by consultant doctors (the highest level of qualification).
They usually have more junior colleagues working with them with whom you
are likely to have more frequent contact. These include specialist registrars
(SpRs) (who often have a lot of experience in the field), senior house officers
(SHOs) (newly qualified doctors who are undergoing further training, e.g. to
become GPs), and medical students. Most teaching hospitals will ask whether
you mind students being present during consultations; it is perfectly in order to
refuse if you do not want this to happen.
The acute phase

Immediate treatment/getting to hospital
However your relative sustained their head injury, the time immediately after-
wards may have been extremely frightening and upsetting for those around the
injured individual. If your relative sustained a mild injury (e.g. bumping their
head), your first contact with medical professionals may have been through the
GP. This may then lead to a hospital admission and contact with other specialist
services), or your relative may have been discharged home with no further action.
In cases when injuries are more severe, you may have had to deal with an emer-
gency and life-threatening situation where things happened very quickly. You
may not have been sure about what was going on, and you may also have been
in a state of emotional shock.
Management at the site of the accident

In many cases, the most important actions immediately after an accident or
incident will have been undertaken by bystanders and ambulance crews checking
27
the injured person’s ABC (airway, breathing, circulation). Ambulance crews

will have assessed your relative carefully and noted their level of consciousness
at that time using the Glasgow Coma Scale (GCS) (see Chapter 2). Once stabi-
lized, the injured person will have been transferred to hospital.
Management in hospital
Initial assessment in the Accident and Emergency (A&E) department
Once a person arrives at the A&E department, they are examined by doctors
and nurses. The following examinations are performed.
◆ Vital signs Blood pressure, heart beat, breathing sounds of the lung,
and temperature are measured. People who suffer a head injury often go into
shock with a serious drop in blood pressure, which reduces the availability of
oxygen and nutrients to the brain and other parts of the body. Parts of the
lungs sometimes collapse, preventing the patient from breathing properly.
◆ Signs of external or internal injuries A person who has a head injury
often also has other injuries, which can affect virtually every part of the body,
including fractures or bleeding inside the abdomen.
◆ Level of consciousness using the GCS As discussed in Chapter 2,
reduced consciousness is the most common symptom after head injury in
the early stages. GCS is the most widely used method to gauge the level of
consciousness.
◆ Reaction of the pupils to light Normal pupils narrow when a light is shone
into the person’s eye. If one or both pupils are wide and do not show this
reaction, it is a sign of severe injury to the brain with oedema (swelling of the
brain).
Further investigations/assessment
If there is any suspicion that the injured person may have suffered fractures,
X-rays of the head, spine, thorax, pelvis, and/or limbs are taken. If the patient
has a moderate or severe head injury, a CT scan (computed tomography) is
performed. This takes an image of the contents of the skull to show whether
there is bruising, bleeding, or swelling of the brain. Other specialist scans, such
as MRI (Magnetic Resonance Imaging), may also be undertaken at this stage.
Ongoing hospital treatment

On the basis of the initial investigations, decisions are made about any further
treatment your relative might need.
Management of patients with mild head injury

If the head injury is mild and there are no signs of further injuries, the A&E
doctor decides whether the patient should be kept in hospital overnight
for observation, or whether he/she can be sent home and told to see the GP
within a few days for a follow-up. In most individuals, the initial symptoms and
28
complaints such as headache, dizziness, and sleepiness improve within days or

weeks, although sometimes it can take months.
Management of patients with moderate or severe head injury

At this early stage, the emphasis is on stabilizing the person or getting them out
of immediate danger. More detailed assessment/investigations (e.g. scans) may
be done once this has been achieved. These patients will remain in hospital for
further, and more intensive treatments—ranging from surgery to rehabilitation.
Such treatments will be focused not only on treating the initial injuries, but also
on preventing further complications; they may require intensive and prolonged
input from a range of head injury professionals lasting up to many months. The
treatment of these patients depends on the findings in the examinations.
◆ Ventilation Patients who are in a coma are intubated and ventilated. A plastic
tube is carefully inserted into their trachea (windpipe) to ensure good access
of air into the lungs. If they cannot breathe for themselves, a machine (venti-
lator) will do it for them by pumping air into their lungs regularly. If a patient
needs to be ventilated for a longer period of time, a tracheostomy tube will
be inserted through a surgical cut in the front of the neck.
◆ Sedation Some severely head-injured patients admitted to A&E are confused,
restless, and even aggressive (all common in the early stages). They need to
be sedated (put to sleep with medication) before they can be intubated. This
is also called ‘artificial coma’. This is done for the injured person’s benefit
and protection.
◆ Infusions Patients are given intravenous (IV) infusions (into the veins) with
fluid to prevent them from going into shock, particularly if there was blood
loss. Alongside this very basic feeding will also be provided intravenously in
the first day or two.
◆ Neurosurgeons will be consulted if the CT scan shows complications.
They decide whether brain surgery has to be performed, which may include
drilling a hole in the skull and extracting the haematoma or excess fluid or
removing a part of the skull bone in the case of oedema in order to give the
swollen brain more space. If the neurosurgeons are concerned that the brain
may swell further, they often drill a hole in the skull and insert a small device
called an intracranial pressure (ICP) monitor. This is usually removed after a
few days.
◆ Other injuries sustained in the accident are treated (e.g. fractures are treated
surgically, sometimes with metal plates and screws).
This can be a time of great uncertainty and fear for family members, and
questions mainly focus on whether or not their relative will survive. Although
the procedures described above are essential, they can be upsetting for relatives.
You may also be very confused about what the tubes/equipment are for. Once
the acute phase is over, ask about the equipment and machinery your relative is
29
attached to and how it is helping him/her. A North American website (www.wait-

ing.com), whose primary focus is patients in coma and their families, provides
detailed information about intensive care unit (ICU) settings, machinery, and
procedures. It is also helpful to familiarize yourself with your relative’s medication
(ask about side effects and alternatives) and the procedures they are undergoing.
Treatment in the ICU

After acute treatment in A&E, comatose patients are transferred to the ICU
where their state is closely supervised by nurses and doctors. Previous treatments
are continued, including ventilation, sedation, and infusions. A plastic tube is
inserted through the nose into the stomach (nasogastric tube), through which
feeding is given.
Treatment in the ICU has several functions

◆ Monitoring and treatment of head injury-related changes, such as signs
of brain oedema or hydrocephalus.
◆ Continuous monitoring and treatment of changes in basic bodily
functions, such as blood pressure, breathing, and blood composition.
◆ Providing ‘round the clock’ care.
◆ Helping the patient to come out of coma. The medical staff on the ICU
try to reduce the sedation and, if possible, reduce the ventilation to test
whether the patient can breathe unaided.
◆ Providing appropriate preventative treatments, such as passive move-
ment of the injured person’s limbs by physiotherapists to prevent further
complications.
The length of stay on the ICU varies greatly from a few days to many weeks.
Epileptic seizures
Some people have epileptic seizures or fits within the first few days of their
head injury, with individuals who have had penetrating head injury or hae-
matoma in the brain being at greatest risk. Seizures occur because the damage
in the brain leads to over-excitement of brain cells, which causes them to fire in
an uncontrolled fashion. Epileptic seizures are treated with anticonvulsant
drugs such as phenytoin; their treatment is discussed in Chapter 4.
Transfer from the ICU to the open ward

Once patients are medically stable they are typically transferred to an open
ward. Depending on what is available in your area, this could be a neurology
and neurosurgical ward, local stroke unit, trauma and orthopaedic ward, or
other general surgery and medical ward. Occasionally hospitals have a dedicated
‘head injury’ or ‘brain injury’ ward but this is not the norm. Whatever the
30
name of the ward, the most important thing is that the people looking after your
relative are trained to look after individuals with head injury.
Common problems and complications at this stage of recovery

Post-traumatic amnesia (PTA)
As we described in Chapter 2, it is common for individuals in the early stages of
recovery to experience a time of confusion. In this condition, patients need very
close supervision to ensure that they do not harm themselves or other people.
It is important to realize that they are not responsible for their actions. If your
relative is aggressive or hostile towards you, he/she is not acting by free will.
In dealing with people in such a state, a ‘non-confrontational’ approach is
advisable: it is usually more effective to calm them down or distract them, rather
than to try to argue with them or give them orders. In many cases, such patients
need to be treated with sedative drugs to calm them down.
Immobility
If your relative remains immobile in bed for weeks, he/she is at increased risk of
developing a range of complications:
◆ pneumonia
◆ pressure sores of the skin
◆ contractures of the limb joints (see Chapter 4)
◆ deep venous thrombosis (DVT) (blood clots in the veins of the legs)
◆ autonomic function problems (difficulty in controlling body temperature).
Focus of care at this stage

◆ To continue to manage and monitor head-injury related medical
complications.
◆ To manage and monitor associated injuries such as fractures of the arms
or legs.
◆ To provide assessments and interventions. These early rehabilitation
interventions are not likely to be intensive, but rather brief and focused.
◆ Physiotherapists start mobilizing patients, helping them first to sit,
later to stand and walk.
◆ Speech therapists assess whether the patient is safe to swallow food
and drink. They also practise speaking if the patient has a problem
with this.
◆ Occupational therapists retrain patients to dress and wash themselves.
◆ Neuropsychologists assess the patients’ mental functions, and advise
on how to deal with them if they are aggressive.
31
◆ To plan to discharge safely the injured person from acute hospital care—
this might involve returning home, seeking alternative care or transferring
to another facility for further specialist treatment and rehabilitation.
It is important at this stage that you continue to seek information about the
options for further input and care for your relative, getting second opinions
if necessary, or begin to think about your relative returning home (if fur-
ther rehabilitation is not indicated or necessary). Ask questions to help you
with the many decisions you will need to make.
The post-acute phase

Leaving the acute hospital
The next stage will depend on how severe the injury was, and what resources
are available locally. The most common options are:
◆ transfer to a neuro-rehabilitation centre
◆ transfer to an alternative form of long-term care, such as a nursing home
◆ discharge home:
◆ with further input for your relative (this may range from intermittent
monitoring to extensive community-based outpatient treatment)
◆ without any further input (either because further treatment is not indicated/
appropriate or is not available locally).
Although the majority of people with head injury do not receive further care
after their injury and are discharged home, rehabilitation is one of the issues
most commonly concerning families.
Transfer to a neuro-rehabilitation centre

Neuro-rehabilitation aims to support your relative in their recovery so that they
can live as safely and independently as possible. The term simply refers to reha-
bilitation occurring after neurological illnesses or injuries. This type of support is
provided by a team of rehabilitation professionals. The emphasis is on working in
collaboration with injured people and their families to achieve meaningful goals
that will improve their quality of life. There is a strong focus on seeing the injured
person as a ‘whole’ (not as a set of problems) in their normal everyday context.
Whether occurring in hospital, at home, or in a specialist rehabilitation centre,
rehabilitation should be started as soon as possible, and should be provided by a
specialist team. Together their goal is to support the patients and their families in:
◆ recovering from their injury
◆ relearning the abilities they have lost, such as moving, speaking, remembering
◆ regaining independence in their everyday life.
32
To help us understand the impact of an illness or injury on a person, the World

Health Organization (WHO) has proposed an International Classification of
Functioning, Disability, and Health (ICF) (Table 3.2). This model looks not
only at bodily functions, but also at the consequences of the illness or trauma
on the person’s everyday life, including their ability to care for themselves, as
well as the impact on their social roles.
Table 3.2 The WHO Classification of Functioning, Disability, and Health

Example
Impairment The symptoms and signs, such as John Miller has a weakness of his right
weakness of an arm and leg, slurred speech, or arm
forgetfulness
Activity (limitation in activity is also called Because of the weakness, he cannot
disability) This looks at activities of daily living dress and wash himself
(ADL) such as washing, dressing, feeding,
continence, and walking
Participation (limitation in participation is also He cannot do his job as a plumber
called handicap) This refers to changes in the
person’s social roles within their environment, e.g.
their job and their circle of friends
Although, at first sight, the model may appear rather abstract, it actually has
great practical value for the daily clinical work with people after head injury.
It shows that even if the impairment (e.g. the weakness of the arm) does not
improve sufficiently, your relative may be able to make progress in his/her activ-
ities or ability to participate in important social roles. For example, he/she may
learn how to dress and wash with the other hand.
Basic principles of therapy used in rehabilitation

◆ Practice of an impaired function: typically this is repetitive, starting
with simple tasks and slowly increasing the level of difficulty. For instance,
if someone has difficulty moving an arm, they will be encouraged to
practice moving this arm. Unfortunately, even with the best will in the
world, some people will not regain the use of their arm as it was before.
◆ Therefore compensatory techniques are often used to help the patient
to achieve the goal in a different way. For instance, a person with a weak-
ness of the right arm will be taught to dress and wash themselves with
their left arm, and a person with memory problems can be encouraged
to use memory aids such as a diary.
33
The different members of the rehabilitation team work together on different

aspects of your relative’s problems. It is important that they all work together
with your relative and yourself towards goals that everyone agrees on. Most neuro-
rehabilitation centres encourage family members to become actively involved in
the therapies.
During neuro-rehabilitation, the emphasis shifts increasingly towards preparing
your relative (and yourself) for returning to live at home. Your relative may be
encouraged to spend increasing amounts of time at home. Discharge home
from a rehabilitation centre is usually organized in a systematic fashion, and
follow-up therapies and care are organized in agreement with you and your
relative.
Rehabilitation can be a time of both hope and frustration for your relative and
yourself. The process often begins with much optimism (sometimes against
advice) for considerable recovery. Sometimes the gains made by injured people
following rehabilitation are significant; at other times the progress is modest
and slow and families can feel very ‘let down’ by services. Therefore it is impor-
tant to be as actively involved in your relative’s treatment as possible, so that you
are aware of what is realistic and can ask questions about and seek support in
dealing with problems.
Rehabilitation can also be a time of conflict within families (e.g. if the family
and their relative cannot agree on common goals, or if the injured person is not
fully aware of their difficulties) or most commonly with members of the team
(e.g. if family members feel that progress is too slow or they do not agree with
the team’s recommendations). Again, it is helpful to be open about concerns
and find ways to work in collaboration with your relative’s team.
People may require transfer to other specialist units if they need treatment
for very specific difficulties. Transfer might occur directly from the neuro-
rehabilitation centre, especially if the person requires assistance in managing
specific problems, such as severe behavioural disturbance, which might be
interfering with their progress in other areas. Neuro-rehabilitation may be
resumed at a later stage when these issues are better managed.
Transfer to specialist placements

It is possible that your relative will not make the progress expected, will require
additional specialist input, and that neither rehabilitation nor returning home
will be viable options (see Chapter 2 on issues relating to recovery). In this
event it is likely that they will be discharged to either a specialist long-term care
and therapy unit or a nursing home (although these are not in plentiful supply).
Patients who require this option usually have the following conditions.
Low-awareness states and persistent vegetative state
We have described these states in Chapter 2. If feeding is maintained and good
nursing care is continued, a person can continue to live for many months or
34
even years in such a condition. Life expectancy is reduced, mainly due to chest
infections.
While occasional recovery from these states does occur, it is not common, and
predicting who might recover and to what level is not possible, particularly in
the first months after injury.
The treatment of a person in a vegetative state focuses on keeping him/her alive
and on preventing complications. If the unresponsiveness lasts for several weeks,
people often have a PEG (percutaneous endoscopic gastrostomy) tube inserted
surgically through the skin directly into the stomach. In this way, a person can
be fed over a long time. Nurses reposition the patient regularly to avoid pressure
sores. Physiotherapists move the patient’s arms and legs to keep them supple.
Families often benefit from longer-term emotional support in coming to terms
with having a relative with such a condition.
Behavioural problems
A small number of individuals with persisting severe behavioural problems, in
particular physical violence, may need long-term support and care in a specialist
unit with a very tightly structured timetable.
The decision whether to place your relative in such a facility will need to be dis-
cussed very carefully with you and your relative as this can be a difficult time
emotionally. Most family members do not wish this for their relative and can feel
immense guilt. As well as securing emotional support for yourself, it is important
to gather as much information about the residential options available; it may be
necessary to visit/consider facilities that are a little further geographically from
you to find something suitable for your relative. At this stage, families may find
themselves in a ‘limbo’ type state—unsure if their relative will recover further.
A small number of patients may need to be transferred to specialist orthopaedic
or spinal injury rehabilitation services instead of or as well as receiving neuro-
rehabilitation services if they have extensive physical problems alongside the
brain injury.
Availability of specialist rehabilitation services

All the rehabilitation services described are in short supply (a fact acknowledged
by recent practice guidelines) so relatively few people can access them and usually
only after a considerable waiting period. Specialist head injury services are also
geographically disparate (with nothing in more rural areas), so you may need to
be prepared to advocate actively for services on behalf of your relative, or to access
those that are further afield. The national Headway helpline can be a useful
source of information. In addition, your local Headway group may be able to
provide information and support with this.
The vast majority of people with head injury are discharged home from hospital
without further input. There are several reasons why this might occur: they may
35
not have significant enough problems that require input, or they may not be
deemed ‘ready’ for a period of intensive rehabilitation and require further time
to recover physically (e.g. they may still be a little too unwell or tire too easily to
be able to manage intensive therapy sessions). However, for many, despite an
identified need for rehabilitation, there are few or no resources available in their
locality.
Discharge home
The vast majority of people who sustain a head injury will be discharged home
after initial hospital treatment, and only a handful of these will (for many reasons)
go on to receive additional input after this. This transition home can be a worrying
time for families and it is important to collect as much information as possible
about what is available to you locally. Headway can be a good initial contact.
Sometimes the individual may have to leave the acute ward before a rehabilita-
tion place is available, which can be a source of great family worry and stress,
so it is important to get information about possible interim care arrangements.
If they are to be discharged home first, it will be useful (and sometimes essential)
to have your home assessed by an occupational therapist and physiotherapist
(this is often called an access visit). This will address key issues such as the
accessibility of your home, and the adequacy and safety of facilities for using the
toilet, bathing, and so on.
It is also important to ensure that any practical help you will need (e.g. profes-
sional carers) is arranged. When your relative returns home, other family
members may become involved in aspects of physical care (such as washing and
dressing). This is fine as long as it is what you all want to happen—and this
should be discussed with you before leaving home or the rehabilitation unit.
If you do not want this (or after your relative returns home you find it too tiring
or difficult) then you should think about accessing more formal help. This usually
means contacting a care agency who employ trained carers to work with people
in their own homes on a regular basis. The weekly plan of how many carers and
when they visit is often referred to as a ‘care package’. Social services can discuss
with you how this can be organized and paid for (a care manager or social
worker is usually central to this). They will usually need to assess the family
finances as part of this process, so making time to gather together any financial
paperwork can be helpful. The Citizen’s Advice Bureau can provide advice on
this. The telephone number for the social services departments for your area is
listed in the telephone directory.
For most individuals who have been discharged home from hospital, initial
symptoms and complaints such as headache, dizziness, and fatigue improve
within days or weeks, although sometimes it takes months. Some symptoms
may persist longer; they will be discussed in the following chapters. The injured
person may experience very subtle problems (e.g. with concentration), and feel more
irritable or low in mood. The irritability, sometimes leading to angry outbursts
36
over little things, can be the most noticeable ongoing problem for the family.
This is particularly troublesome if the injured person is not aware of their
behaviour and denies that anything is wrong. Things that may help your relative
at this stage include:
◆ encouraging them to rest regularly (and not rush back to work and other
duties)
◆ reducing noise and other distractions at home (e.g. they may feel overwhelmed
by lots of visitors).
Sometimes, headache and sleepiness become worse in the days after discharge.
This does not necessarily indicate any danger, but occasionally it might be a sign
that a subdural or extradural haematoma (bleeding inside the skull which com-
presses the brain (see Chapter 2)) is developing. Therefore a doctor should be
consulted as soon as possible—either your GP or at the nearest A&E depart-
ment. The doctor will do a clinical examination and possibly arrange a CT scan
of the brain.
There are instances when injuries to other parts of the body are so severe
that the head injury is not noticed in hospital. These patients may be dis-
charged home after the fractures have been treated, and only when they try
to return to work does it become evident that something is wrong with their
memory or their behaviour. Also, other more subtle injuries become apparent
only later, such as loss of smell and damage to the vestibular system in the
inner ear, causing dizziness.
Discharge home with further neuro-rehabilitation input

Input on an outpatient basis can range from a follow-up by a doctor in a hospi-
tal outpatient clinic to outpatient therapy from rehabilitation professionals.
Some hospitals make referrals to community rehabilitation teams who visit your
relative at home; others make referrals to self-help organizations, such as
Headway, or other specialist services (such as vocational rehabilitation schemes
to support someone returning to work) if they exist in that area.
If your relative was previously receiving inpatient rehabilitation, the biggest
issue for you all is likely to be adjustment to the reduction in the amount of
therapy they will receive as an out-patient. It is likely to be of a much lower
frequency than previously. This can cause distress and fear for patients and their
relatives, as they worry that this will slow their recovery.
Discharge home without further input
The vast majority of people who have been seen in hospital for a head injury
will be discharged home without further input. However, UK guidelines on the
management of head injury highlight the need for all people presenting to A&E
37
departments with head injury to be given information about what possible

complications can be expected, and how and when to seek further advice.
The guidelines also acknowledge that high levels of disability are experienced
by large numbers of people after head injury, but that specialist services are
sparse and geographically disparate. Thus there is a huge shortfall in the availa-
bility of services for those who need ongoing input.
Contact your GP in the first instance if you feel that your relative should be
receiving these services but is currently not doing so.
When return home is not possible

Unfortunately, some patients will be unable to return home because it is unsafe
for them to do so and they need higher levels of supervision or care than that
which can be provided within their home environment. For example, an indi-
vidual may have significant memory problems and need support with many
aspects of everyday life. In these cases the level of care required exceeds the type
of ‘care package’ described earlier and the best option is residential or nursing
care placement. It is important that you are fully informed of all options and
visit potential placements if possible. Funding for such placements can be com-
plex and will depend on your relative’s particular pattern of needs. Again, social
services and the health professionals involved in your relative’s care can advise
you about this and provide information on available placements.
In the UK there are now national guidelines commissioned by the NHS

and health-professional groups which describe what should be available to
you and your relative. These are listed at the end of this book. If you are
unsure what sort of help your head-injured relative should be having at any
stage or how help can be organized, ask your GP. If he/she is not sure, you
may find Headway a useful place to start.
Recovery after head injury

In the previous chapter we started to discuss the important issue of recovery
after head injury. Understandably this is one of the most important issues when
a relative is injured and, unfortunately, one of the most difficult to address with
any certainty.
While your relative is following the various pathways through different services
and treatment teams in hospital and after discharge, the recovery process is
taking place.
Mechanisms of recovery
How the brain ‘recovers’ after head injury is not fully understood. We know that
it reacts to the damage by activating its repair systems. The blood from the
38
haematomas and the ‘debris’ from the destroyed brain cells are cleaned up by
the body’s normal mechanisms. The oedema also drains away as the excess
water is taken back into the blood stream. Unfortunately, unlike other parts of
the body such as skin or bones, the brain is not good at regrowing those parts
that have been irreversibly damaged. However, a few different processes in the
brain do come into play that allow for some recovery. They are summarized
under the term plasticity of the brain.
◆ Some brain cells have been temporarily damaged/injured, but not killed, and
start to recover. It is thought that this can explain some of the initial improve-
ment seen.
◆ Some neurons that have survived but lost their axons (their branches) can
regrow them, thereby re-establishing contact with other brain cells by form-
ing new connections (a kind of brain ‘rewiring’).
◆ In time, undamaged parts of the brain can learn to take over some of the
functions of the damaged parts of the brain.
These processes are the basis of the spontaneous improvements that you wit-
ness in your relative’s responsiveness and alertness, and in areas such as speech,
memory, and movements.
‘When will my relative get better?’ or ‘Will he/she make a full

recovery?’
It is unfortunate that these most burning questions are the hardest for hospital
staff to answer. If the doctors reply to you: ‘We don’t know yet. We will have to
wait and see’, they are being neither evasive nor incompetent. They are merely
being honest and ensuring that they do not give you inaccurate information.
The rate and degree of recovery

The rate of recovery after head injury is as individual as each head injury, and
therefore predictions are nearly impossible to make in the early stages. However,
some general points about recovery can be applied to the ‘average’ person.
There are several criteria that can be used to narrow down the possible future
outcomes.
◆ The severity of the head injury is the best predictor of recovery. The more
severe the injury, the longer is the recovery (and less recovery is usually
made). However, there are always exceptions to this. Severity can be meas-
ured by the Glasgow Coma Scale (GCS), the length of post-traumatic
amnesia (PTA), or the length of the person’s unconsciousness (as described
in Chapter 2).
◆ Age is a factor, as younger people have a better chance of a good recovery
than the elderly.
◆ The location of the injury in the brain, as shown on the CT scan, determines
the type of ongoing problems your relative may experience. This is because,
39
as we saw in Chapter 2, different parts of the brain are specialized to perform

certain functions, such as moving the arms and legs, speaking, or
remembering.
◆ Quality of hospital care and treatment in the early stages.
◆ Availability of specialist rehabilitation.
◆ Support from family and friends.
Depending on these factors, any outcome is possible, from complete recovery
(in most patients with mild head injury and some patients with moderate head
injury) to early death or persistent vegetative state. Most people with moderate
and severe head injury will not make a full recovery, but will retain some prob-
lems in one or more areas. These types of enduring problems are discussed in
more detail in the following chapters.
When a person comes out of coma following a head injury, the first signs of
recovery may appear in different ways, depending on which part of the brain
was most severely damaged. Some people may start by saying a word in a
slurred voice, others begin moving an arm or a leg, or they may open their
eyes and look around the room. With ongoing improvement in levels of alert-
ness, areas of particular difficulty become clearer. For instance, some patients
may start recognizing their family members, speaking, and remembering
who visited them the day before, but cannot move their left arm and leg. Others
may regain good movement of arms and legs and start walking around, but
are confused, restless, and agitated, and unable to tell who their family
members are.
The recovery of a person after head injury is a gradual process which can take
hours (in very mild cases only), but more likely days, weeks, months, or even
years. It is never sudden. If your relative has been in a coma for a few days or
longer, do not expect him/her to wake up suddenly and talk to you as if nothing
had happened. Such recoveries are seen in Hollywood films, but sadly not in
real life.
Recovery after head injury is fastest in the first 6 months or so, and then gradu-
ally slows down. However, improvement can continue for several years. This
means that it is important not to give up hope too early. If you are with your rel-
ative every day, you may find, after a while, that you no longer notice further
improvement. If this is the case, ask other relatives, friends, or medical profes-
sionals who only see your relative from time to time. Sometimes they are aware
of positive changes that have occurred between visits which you had not noticed,
because they have happened so slowly.
The term ‘plateauing’ is often used to describe the slowing down of recovery
and is often synonymous with the ending of rehabilitation. Therefore this can be a
time of great distress for patients and families. However, a slowing down of
recovery does not necessarily imply a stopping of recovery; changes may occur
40
sporadically, and improvements can be seen in people many years after injury.
This can occur particularly if the person is offered further opportunities to
learn alternative ways of managing or compensating for problems.
02 Frequently asked questions

◆ How long can we expect recovery to continue?
Recovery after head injury is fastest in the first 6 months or so, and it
gradually slows down afterwards. However, improvement can continue
for several years, particularly in people under 60 years of age. This
means that you and your relative should not give up hope too early.
◆ Is there anything we can do to speed up my relative’s recovery?
Specialist rehabilitation is the only thing that has been shown to maximize
the recovery of a person after head injury. So far, no drug has been
found which is of benefit in speeding up the progress.
◆ Would more therapy help?
Patients with moderate or severe head injury who have recovered to
such an extent that they can actively participate in rehabilitation should
have therapies on every working day. However, it must be realized that
these patients fatigue easily, and therefore need rest periods in between
therapy sessions. Having too much therapy can be just as detrimental as
not getting enough.
◆ Would a longer rehabilitation stay help?
Rehabilitation of patients after moderate or severe head injury in a
specialist centre often lasts for several months. At some point, the advan-
tages of therapies in the protected, but artificial, environment of the
rehabilitation centre against the advantages of the patient returning to
his/her familiar surrounding must be weighed up. Therefore longer does
not automatically mean better.
41
4
Changes in physical
functioning
06 Key points
◆ After a severe head injury, motor symptoms, swallowing deficits, sensory
deficits, epileptic seizures, and loss of bladder and bowel control are
common.
◆ Dizziness, headaches, and fatigue can occur not only after severe head
injury, but also after mild head injury.
◆ Treatments which can help speed up recovery exist for most of these
symptoms.
◆ Research has shown that families can cope well with their relative’s
physical changes when given advice and support.
In this chapter we focus on the physical problems that arise directly from inju-
ries to those areas of the brain that are involved in movement control, balance,
and processing of incoming information from the senses.
Motor/movement problems
Our movements are orchestrated by the brain in a highly complex manner
which is usually quite reliable. This is achieved by a sophisticated interaction of
several diverse centres in the brain. Each centre is specialized to a certain aspect
of our movements: to keep us upright, to walk automatically, to start a movement,
to stop it, to move powerfully or gently, or smoothly rather than jerkily.
After severe head injury, difficulties with moving different body parts are fre-
quently found because of damage to areas such as the cerebellum and the motor
cortex, leading to weakness, spasticity of limbs, reduced balance/coordination,
and involuntary movements.
Muscle weakness
The most common motor problem is muscle weakness (paresis). It can be
caused by damage to the parts of the brain which control our movements (e.g.
the motor cortex) or by damage to the pathways through which nerve impulses
43
from these centres are normally sent downwards to the spinal cord. Muscle
weakness can occur in different patterns.
◆ Hemiparesis means that the injured person has a weakness on one side
of his/her body: the arm, the leg, and sometimes the face is weak on the
same side. Remember that left-sided weakness arises from right-sided brain
injury, and vice versa. If this weakness is very severe, without any activity or
movement, it is called hemiplegia.
◆ Tetraparesis (or quadriparesis) is the state in which an individual has
weakness in all four limbs.
◆ Paraparesis means weakness in both legs. This can occur when the person
has a spinal cord injury in addition to the head injury.
Weakness is typically worse in the hand than in the shoulder, and in the foot than
in the hip. This is because separate parts of the brain are dedicated to controlling
the muscles of the trunk and close to the trunk that keep us upright during
sitting, standing, and walking. Sometimes these trunk muscles are also affected,
particularly in the early stages after the injury. The patient may have difficulty
sitting and keeping his/her head upright, and may need supporting by a person
or something to lean on, such as pillows.
Recovery from muscle weakness is always gradual, not sudden, and it usually
moves outwards from the trunk: the strength of the trunk improves before the
strength of the arms and legs, and the strength of the hands and feet returns last.
Spasticity
In the days and weeks following the head injury, the paretic (weak) limbs
sometimes become stiffer; when you try to move them, you can feel a resistance
and the injured person can feel pain. This stiffness is called increased muscle
tone or spasticity. It can occur in different patterns and you might hear your
relative’s doctor or physiotherapist use special terms to describe these patterns
of stiffness. Typically after head injury, the spastic arm is adducted (pulled
towards the trunk in the shoulder joint), the elbow, wrist, and fingers are flexed
(bent), whereas the leg is mostly extended (straightened) in the knee, and the
foot is plantarflexed (pointing downward) and inverted (pointing inward).
Sometimes a spastic leg suddenly jumps (spasm), and it can shake rhythmically
(clonus). Spasticity interferes with an individual’s attempts to move his/her
limbs and can lead to abnormal posture of arms, legs, or body. It can result in
clumsiness and cause people to tire quickly. It adds yet another obstacle that
has to be overcome during recovery.
Contractures
If a weak arm or leg is not moved regularly, an additional type of stiffness, called
contracture, can develop in the soft tissues around the joints. This is caused by
shortening of muscle fibres and development of fibrous tissue in the surrounding
44
Chapter 4 · Changes in physical functioning
soft tissues. It is important to work hard to prevent this through exercise,

because once contractures have developed, they can only be reversed by
surgery.
Ataxia
Ataxia is a motor difficulty whereby the muscle power can be good, but the
arm or leg performs jerky, clumsy, and uncoordinated movements. It is usually
caused by damage to the cerebellum. Ataxia is often accompanied by limb
tremor (rhythmic shaking).
Apraxia
Some patients have difficulty performing voluntary movements or actions (such
as waving goodbye) because of a condition called apraxia. Here, patients do
not necessarily have weakness or clumsiness in their movements, but the mental
plan to perform a certain movement is disrupted. For instance, someone with
this condition may be able to make a fist with full force, but when you ask them
to act as if they were brushing their teeth, they cannot do it.
The gait (walking) is usually disturbed in patients with weakness or ataxia of
one or both legs, making them insecure on their legs. If they try to stand up and
walk without help, they are at great risk of falling and injuring themselves.
Ways to help your relative with motor problems

Physical difficulties are likely to cause your relative and yourself a great deal
of concern. Being unable to walk, sit unaided, control fine motor movements,
and so on will obviously have an impact on the person’s ability to return to their
previous roles and responsibilities (care for themselves, return to work, driving,
etc.). The pattern/types of physical difficulties your relative experiences after
their head injury will be unique to them. What follows is an overview of some of
the treatments on offer. Further information and support can be found in
Appendix 1.
Physiotherapy
Some physical difficulties can be treated by physiotherapy. Physiotherapists
employ therapies to improve muscle control of the whole body, balance, and
walking. They:
◆ help the individual rebuild their strength
◆ refine their coordination
◆ improve their posture and gait
◆ reduce spasticity
◆ alleviate pain
◆ prevent complications such as contractures.
45
Active physiotherapy
The patient is encouraged to perform activities, and the therapist gives feedback
to help them achieve fine control of specific muscles. At first, the individual may
only be able to lift the arm in the shoulder joint. The movement is practised,
and if recovery of muscles of the upper arm and forearm begins, this will be
incorporated into the exercises. Exercises steadily become more difficult. The
same is true for recovery of motor function of the legs: the patient will practise
standing before he/she starts walking. Therapists will aim to help the individual
perform the movements in a manner that is as close as possible to the normal
healthy way. This is not always achievable if the injury has damaged the motor
areas of the brain so severely (see Chapter 2) that the arm or leg does not regain
its former strength. In this case, the therapist will work with the patient
to practise and learn alternative ways of achieving the goal.
Passive therapy
This counters the effect of spasticity by relaxing tight muscles. It includes lying
the patient on his/her side, or sitting or standing him/her in a support frame and
performing gentle stretching exercises. You may be asked to do these with your
relative following discharge from the rehabilitation centre, once you have been
trained by the physiotherapists.
Putting a spastic limb in a plaster cast can prolong the stretching effect and
helps to achieve a more natural position. Adaptive equipment and mobility aids
include:
◆ ankle–foot orthoses (AFOs)—foot splints made from plastic—to keep the
foot at an angle of 90° during walking
◆ arm or leg splints to support weak muscles or counter spasticity
◆ canes and frames (e.g. a Zimmer frame) to aid walking.
The therapist will train your relative how and when to use these. Your relative
may be advised to use a wheelchair even if he/she has started to walk again,
either to help conserve energy or to remain safe if there are problems with
balance. An occupational therapist will advise on what sort of wheelchair would
be most suitable for your relative. This may need to be reviewed over time if
your relative’s movement abilities or needs change significantly.
Other treatments
Additional therapeutic techniques can be used in conjunction with the methods
described above.
◆ Hydrotherapy is physiotherapy performed in a swimming pool.
◆ Treadmill training with partial body-weight support is a technique in
which the patient is strapped into a harness hanging above a treadmill on
which he/she practises walking.
46
◆ Constraint-induced movement therapy, also called forced-use

therapy, immobilizes the patient’s unaffected arm in a sling or a splint
for several hours a day, forcing him/her to use the affected arm for all
activities.
◆ Functional electrical stimulation (FES) elicits muscle contractions with
electric impulses.
Specific treatments to reduce spasticity include drugs such as baclofen, tizanidine,

or gabapentin (which are taken by mouth), and injections with botulinum toxin.
In severe cases, surgical treatments such as the implantation of a baclofen
pump or lengthening of muscles or tendons can be considered.
How to support your relative with mobility problems

If your relative is not accessing physiotherapy but is experiencing any of the
problems described, you should seek advice from your GP or organizations
such as Headway. If your relative is undertaking rehabilitation you might find
it helpful to attend sessions as well, to see how they have been taught and how
you can help safely. In addition, your relative may find your presence
reassuring.
Be patient and avoid doing things for your relative if they can and want
to do things for themselves, even if it takes longer. They are more likely to
get faster as well as feel much better if they manage to complete tasks
themselves.
It can help to be aware that people with head injury can experience high levels
of anxiety (about issues such as falling, or about whether they will recover fully)
and these concerns can interfere with their confidence when working on physical
problems. Ask for help if your relative’s worries do not respond to support and
reassurance.
One of the most important ways that you can help your relative is to collect all
available information and be aware of what services are available in their area
and how to access them.
◆ Make sure that you show as much understanding as possible of any physical
problems and the best ways to get around them and stop them getting
worse.
◆ If your relative agrees, make sure that you ask their GP or other professionals
questions at every opportunity about what you can do to help.
◆ Try to make sure that you both have all the necessary information and advice
before buying any expensive equipment or planning expensive alterations to
your home.
47
Swallowing problems
Swallowing problems are common after head injury (i.e. to be able to eat and
drink without the risk of food or liquids going down the wrong way onto the
lungs, which could result in choking and/or chest infection). As with most
problems after head injury, the nature and severity of these difficulties will
depend on the location and extent of damage to the brain. Problems with swal-
lowing are caused by weakness of, or difficulty in coordinating the muscles
involved in swallowing as well as control of breathing.
People with head injury may be able to swallow saliva but be unsafe to eat or
drink other types of fluid or foods. Less severe, but very troublesome, can be
problems with drooling/dribbling of saliva which can cause social embarrass-
ment. If a person is thought to have swallowing difficulties they will be referred
to a speech and language therapist (SALT) for assessment of their swallowing
(this might occur in a hospital setting or in the community).
The SALT will advise on whether the person is safe to eat and drink or not, and
whether any modifications are needed to the consistency of food and drink
given to make it safe for the individual. For example, sometimes fluids should
be thickened using a drink-thickening powder which will be prescribed. They
will recommend the consistency, e.g. to the consistency of single cream or
syrup, to make them safer to swallow. It is important that advice from a SALT
is taken before attempting to thicken fluids yourself. They will also advise on
positions to make swallowing safer (e.g. sitting upright with chin tucked slightly
down to swallow). Many people do not enjoy having an adapted diet of thick-
ened liquids and/or pureed food, and this can be a source of tension within fam-
ilies, with meal times losing their enjoyment and pleasure for the injured
person.
Most swallowing problems can be assessed and diagnosed by clinical examina-
tion and oral trials by a SALT. However, additional examinations might include
the following.
◆ Fibre-optic endoscopic evaluation of swallowing (FEES) A camera
is passed up the patient’s nose and into their throat to observe muscle
movement and residue post-swallow.
◆ Videofluoroscopy A moving X-ray where a person is asked to swallow
some radio-opaque mixture mixed into different food textures and consist-
encies to assess the safety of their swallowing and the impact of various
strategies.
If the person is unsafe to eat or drink, i.e. there is a risk of food or drink going
down the wrong way into their lungs (aspiration), non-oral feeding (i.e. feeding
via a tube not via the mouth) will be advised. Aspiration can cause severe chest
infections. Non-oral feeding may initially be intravenous and then a nasogastric
tube (a tube up the nose and down to the stomach) may be passed to allow special
48
liquid feed and fluids to be given non-orally. For persistent problems with
swallowing it may be recommended that a percutaneous endoscopic gastros-
tomy (PEG) tube be inserted throught the abdominal wall into the stomach to
enable feeding. The decision as to which method is used will be made by the doc-
tor in charge of the person’s care, following advice from the dietician, the SALT,
and nurses, and discussion with the patient and their family as appropriate.
As the person’s swallowing improves, eating and drinking will be started under
supervision. The PEG tube does not prevent someone from starting to eat or
drink when it is safe, and the tube can be removed once it is no longer
required.
Sensory problems after head injury

If a person has mobility problems after a head injury, he/she usually also has
sensory loss in the same arm and leg. This is because the centres of the brain
which control movements and those which control sensation are very close
together. Having less sensation in a hand or foot means that the person does not
feel objects in their hand properly, and cannot feel the floor underfoot as usual.
Therefore reduced sensation has a negative impact on moving the arm and on
walking safely. Patients who have lost the ability to distinguish hot and cold are
at risk of burning themselves.
Managing loss of sensation

Sensation which has been lost may gradually improve, but it cannot be restored
by therapies or exercises in the same way that motor loss can. Treatment of
sensory loss consists mainly of reminding the patient to pay attention to
where they put their hand or foot. By concentrating on the movements, they
will gradually become more precise. This is something that you can help your
relative with.
Visual deficits
Problems with vision can manifest themselves in different ways, depending on
the site of the brain injury.
Loss of vision in one eye can occur as a consequence of injury to the eye,
or the optic nerve which transports the visual information from the eye into the
brain. The severity of loss of vision may range from mildly blurred vision in
the affected eye to complete blindness of the eye.
Visual field defects in both eyes are usually caused by damage to the brain,
not the eye. In these cases, patients cannot see what is on one side of their visual
fields of both eyes: either on the right side in both eyes or the left side in both eyes.
This visual deficit is called hemianopia. These patients sometimes bump into
door frames or people on their left or right sides because they cannot see them.
Hemianopia needs to be distinguished from a condition called hemineglect
49
where the individual is not aware of one side (mostly the left side) of the space
around them and their own body.
Double vision occurs when the coordination of the movement of both eyes is
disrupted, and the eyes move independently of each other.
Managing visual deficits

Visual problems after head injury can be very debilitating and distressing and,
if not dealt with, can hinder your relative’s progress in other areas of their
recovery. The first step in helping the individual to cope with a visual deficit is
to diagnose the precise nature of the problem by a test in the eye hospital where
ophthalmologists can prescribe visual aids, such as glasses, or an eye patch in
the case of double vision. There are no visual aids available to improve hemian-
opia, but patients usually learn to compensate for the defect by scanning with
their eyes towards the blind side. The rehabilitation team can train them in
achieving this.
Hearing disturbance
Injury to the outer or inner ear can cause hearing loss on one or both sides.
In some cases, people develop tinnitus, an unpleasant ringing in one ear.
The treatment for hearing loss is a hearing aid, but there is no rehabilitation
technique to train the deaf ear to hear better. There is no medical treatment for
tinnitus, but psychological therapies can be helpful in assisting people to learn
to live with it.
Loss of smell
This occurs quite frequently after head injury, but it is often not noticed right
away. It may become obvious when a person with head injury puts on too
much aftershave or perfume, or they do not smell food burning on the cooker.
No treatment exists to improve sense of smell, and so the patient needs to be
encouraged to check food that is cooking and possibly adapt their environment
to increase their safety, such as having smoke detectors installed. Often,
improvement occurs spontaneously, but it can take a long time.
Dizziness and balance problems

The inner ear contains the vestibular system which helps us keep our equilibrium
or balance. It tells us which position our head is in, or which way we are turning
our head, even with our eyes closed. If the vestibular system is damaged, people
suffer from dizziness and problems with balance. Moving the head, bending
over, riding bicycles, and other movements make the dizziness worse and can
cause nausea. The vestibular system is so delicate that it can be damaged even
in a minor head injury. A doctor can diagnose damage to the vestibular system
by observing the patient’s eyes closely: sometimes a fine shaking of the eyes,
called nystagmus, can be seen.
50
Dizziness is not easy to treat. Vestibular rehabilitation with balance retraining

exercises can be taught by a physiotherapist, and drugs such as prochlorpera-
zine may help if the dizziness is accompanied by nausea. Frequently, however,
individuals who suffer from dizziness will have to be supported to learn to live
with it and continue with their daily life, which they are mostly able to do over
time. Sometimes, dizziness is a side effect of medication, in which case the drug
should be replaced with another one. Dizziness can also result from, or be made
worse by, the emotional stress associated with having had the head injury.
Pain and headache

Headache and other pain conditions (particularly neck pain) are frequent after
severe head injury, but can also occur after mild head injury. Usually, pain
diminishes slowly over time. Sometimes the pain is caused by injury to the muscles
and tendons in the neck. If the pain arises from the neck, physiotherapy, which
can include training of posture, massage, and hot/cold packs, often helps.
Otherwise, drug treatment with pain killers such as aspirin or paracetamol is
sometimes necessary.
In other cases, the headaches appear like migraine attacks triggered by the head
injury. Visual problems can also cause headache. If the headache has features
of migraine, then the GP may decide to prescribe migraine medication. If the
pain persists over a longer period of time, psychological therapies can be
helpful.
Fatigue
After head injury, many patients feel less fit, have reduced stamina, and get tired
easily after even small exertions. This is common after all head injuries and
can have several causes, the most important being a diffuse axonal injury (see
Chapter 2) which causes communication between different brain centres to
be disrupted and slow down to some extent. Consequently every physical or
mental activity requires extra effort and extra concentration and therefore is
exhausting. Mood disturbances such as depression or anxiety can also contribute
to the fatigue.
Fatigue can have a major impact on family life. In addition to restricting
activities, it can also lead to increased feelings of frustration and irritability for
the person who is fatigued. Learning to manage fatigue and reduce its effect on
everyday life is a real skill. It often involves the individual relearning how to
spend his/her time each day and how to approach tasks. Key aspects of fatigue
management include learning to rest regularly and pacing yourself. If fatigue is
a problem for your relative, it is helpful to gain more information about how
(and when) this is affecting them. Simply observing their behaviour may also
give you important clues.You should raise this with the professionals involved in
their care (or their GP if they are not accessing rehabilitation). They can provide
your relative with more advice and support in dealing with this.
51
Epileptic seizures
When the brain has been injured, repair mechanisms clean up the debris from
the destroyed brain cells, but a scar remains in place where the brain has lost its
well-organized structure. In these scarred areas, brain cells can become over-
excited and generate electric impulses which are spread throughout the brain
within seconds. This results in the individual having a seizure, ‘fit’, or convulsion.
This is sometimes referred to as post-traumatic epilepsy.
Epileptic seizures can manifest themselves in a variety of ways.
◆ Grand mal seizures (or tonic–clonic seizures) are the most widely known.
The person loses consciousness and falls to the ground, the body stiffens up,
and both arms and legs go into violent shakes. Sometimes the sufferer bites
their tongue or the inside of their cheeks, and sometimes they lose urine or
lose control of their bowels. In most cases, the seizures end by themselves
within a few minutes. Afterwards, a person is typically very tired for the rest
of the day and has no recollection of anything that happened during the
seizure.
◆ Complex focal seizures (or complex partial seizures) are sometimes incor-
rectly referred to as ‘absences’. Here, the individual suddenly stops talking or
whatever they were doing and stares into the air. Sometimes they do strange
things such as grimacing or pulling on their clothes. Usually they are not
aware of what is happening, and they do not respond when spoken to. Unlike
grand mal seizures, consciousness is not lost completely, but it is disturbed
to some degree. In most instances these seizures last less than a minute, and
the person does not remember them.
◆ Simple focal seizures (or simple partial seizures): consciousness is neither
completely lost (as in the grand mal seizure) nor even disturbed (as during
the complex focal seizure). The affected person may develop rhythmic shaking
of an arm or a leg or both, experience strange sensations in these limbs, or
twitching of the corner of the mouth. They are fully aware of what is happening
to them, and they remember it afterwards.
Sometimes a simple or complex focal seizure turns into a grand mal seizure.
In the first days after a severe head injury, epileptic seizures are common, partic-
ularly after penetrating head injuries (see Chapter 2). Therefore it is common
practice to start patients on anti-convulsant drugs such as phenytoin to prevent
future seizures. Because seizures are so common in this situation, patients are
not diagnosed with epilepsy unless seizures recur after weeks or months. The
risk of having a seizure gradually decreases the longer the individual remains
seizure free. Unfortunately, however, even patients who were initially free of fits
can have their first seizure months or even years after the injury.
Epilepsy is a frightening condition for the patient and distressing for family and
others to observe, particularly when it happens for the first time. In most cases,
52
seizures occur without warning and can result in serious injuries. Occasionally
patients experience an ‘aura’ beforehand—an unusual and strange feeling which
can provide some warning. Despite the unpredictability of epileptic seizures,
many epilepsy sufferers lead quite normal lives and succeed in holding onto a
job. Driving a car is not allowed for a year following each seizure, even ‘small’
simple focal seizures.
There are a number of well-known triggers which can bring about an epileptic
seizure, and which should therefore be avoided:
◆ lack of sleep
◆ flickering light
◆ psychological stress
◆ alcohol
◆ some drugs, such as certain antibiotics.
If a person is suspected of having epileptic seizures, an electroencephalogram

(EEG) can be performed in which the electrical activity of the brain is measured
with electrodes on the surface of the skull. If the EEG shows typical spike–wave
patterns, epilepsy is confirmed. Unfortunately, a normal EEG does not exclude
epilepsy, as people with epilepsy can have normal EEG periods between
seizures.
The treatment of epilepsy is based on avoiding the triggers and taking anti-
epileptic medication. Frequently used drugs are phenytoin, carbamazepine,
and lamotrigine. With these drugs, many patients remain seizure free, but may
experience side effects such as sleepiness, drowsiness, and eczema. Once an
individual has been on anti-epileptic drugs, they should never stop taking them
abruptly, as this greatly increases the risk of having a seizure. If someone has
remained seizure free for a long time, they should discuss with their neurologist
whether it is safe to reduce the dose.
Supporting your relative who has epilepsy

When you witness a person having a seizure, particularly if it is a grand mal sei-
zure, the most important thing to do is to ensure that the individual is safe. Most
epileptic seizures terminate by themselves within a minute or two. If the seizure
happens at home, you do not need to call an ambulance unless the seizure con-
tinues for more than 5 minutes. Discuss with the doctor who is in charge of your
relative’s epilepsy treatment whether you should carry midazolam liquid with
you. This drug can be squirted into the patient’s mouth to stop the seizure.
Bladder and bowel problems

After head injury some patients have difficulty controlling their bladder and
bowels. This is called incontinence and is obviously an embarrassing condi-
tion, for which your relative requires understanding and reassurance from you.
53
If the problem is only mild, with the occasional incontinence of urine, a medica-
tion such as oxybutynin may help. If the problem is more severe, a urinary
catheter can be inserted through the urethra into the bladder, allowing the urine
to flow into a bag. These catheters can cause bladder infections. If the inconti-
nence persists, suprapubic catheters can be used which are inserted surgically
through the abdominal wall into the bladder. Alternatives are catheters that are
attached to a condom, or incontinence pads. In order to help your relative to
achieve continence, the nurses will try to establish a more regular toileting
routine with them. Once your relative has returned home, both of you will need
to decide whether you will be the one to help with the toileting, or whether it
should be done by professional carers. Simple changes to your relative’s envi-
ronment may also help to reduce the impact of bladder problems, for example
moving them to a bedroom that is nearer the lavatory, and making sure that
they have urine bottles close to hand near the bed. Make sure that your relative
knows where the nearest toilet is if they have problems with remembering. Your
GP will be able to refer you to a community-based continence advisor who can
support you and your relative with this problem.
How physical problems affect your relative’s

everyday life
The physical problems discussed in this chapter can, alone or in combination,
make everyday life difficult.
Apparently simple acts such as dressing and washing, making a cup of tea, and
going shopping can be difficult, slow, or impossible. Treatment for problems
with self-care and other everyday activities is provided mainly by occupational
therapists and nurses if your relative is participating in rehabilitation. In Chapter 3
we discussed compensatory techniques: they will often be used in dressing and
washing practice when an individual has lost power in one arm and has
to learn to do everything with the other arm or by using special aids (e.g. a long-
handled brush). Activities such as making a cup of tea and going shopping
are also the domain of the occupational therapists who practice them with your
relative. The practice starts simply and is slowly made more and more difficult
and complicated. This is very frustrating and means that your relative needs not
only physical help, but also emotional support.
54

◆ What about the use of alternative therapies, such as acupunc-
ture, seeing a chiropractor, massage, etc.? Will they help my
relative?
There is insufficient evidence from clinical studies available to pass
judgement on whether they are helpful or not. If your relative is consid-
ering any form of alternative therapy, it is useful to discuss this with their
doctor or other professionals involved in their care in the first instance.
◆ Is it safe for my relative to drink alcohol?
After head injury, people typically do not tolerate alcohol very well. This
means that they can get drunk more easily, which may affect not only
their behaviour towards others, but also their movements—they can fall
over more readily. Therefore it is recommended they drink alcohol in
moderation only. If your relative is on anti-epileptic medication, he/she
should drink as little as possible. Alcohol increases the risk of epileptic
seizures, and both alcohol and drugs are a burden on the liver.
◆ My relative has difficulty swallowing. Will he/she be able to eat
and drink again?
This depends on the nature and severity of the swallowing problem.
Following assessment, the speech and language therapist (SALT) will
usually be able to advise on whether the swallowing problem is likely to
be long term. Often time will tell, and a person’s swallow may some-
times improve long after injury.
◆ Will he/she be able to eat normal food again?
Commonly, the recovery of a swallowing problem is gradual. When the
team feel that it is safe to begin eating and drinking, food will be intro-
duced gradually and cautiously, often starting with a specific food
consistency only.
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5
Changes in thinking skills
06 Key points
◆ Cognitive (thinking) difficulties after a head injury are common.
◆ Cognitive changes, even if mild, can have a major impact on everyday
life.
◆ The nature and extent of cognitive difficulties will depend on how
severe the injury is and the brain areas damaged.
◆ Cognitive problems are associated with poorer long-term outcomes
such as failure to return to work.
◆ Although challenging and stressful, the impact of cognitive problems
can be minimized by:
◆ making changes to the environment
◆ altering the demands placed on relative
◆ using a range of simple aids.
◆ Professional support in this area can be accessed via GP and specialist
services.
In this chapter we will look at the most common cognitive (thinking) problems
that can occur after head injury, the causes of these, and what can be done
about them. The key to coping with your relative’s cognitive difficulties is to
become knowledgeable about the problems that can occur, use simple
strategies and aids, alter your relative’s home and work environment, and
learn to look after yourself and know what forms of emotional and practical
support are available to you.
Cognition (or cognitive functioning) refers to the whole range of thinking
processes that we all engage in. This umbrella term includes:
◆ our memory
◆ our ability to concentrate and pay attention to things
◆ multi-tasking
◆ being able to think quickly and flexibly
57
◆ recognizing objects and remembering their names and uses

◆ our ability to reason and solve problems
◆ being able to plan and organize what we do
Cognitive abilities are essential for everyday life—we constantly draw on all
these aspects of thinking.
Common thinking problems after head injury:

an overview
Changes in cognitive functioning frequently occur after a head injury. The
nature and extent of your relative’s cognitive difficulties will depend on how
severe their injury is and the brain areas damaged.
Some thinking processes are associated with specific areas of the brain. Others
involve different parts of the brain working together. Although every head injury
is different, we know that particular brain areas are more vulnerable to damage.
The common areas damaged after a head injury (see Chapter 2) make certain
types of cognitive problems more likely. However, there are no hard and fast
rules, and a range of other factors unique to your relative (such as their age,
general health before the injury, and abilities in each of these areas before their
injury) are also influential and mean that the picture seen after each head injury
is different for everyone.
As we most commonly see damage to the frontal and temporal lobes, together
with diffuse axonal injuries throughout the brain, typical problems are:
◆ slower thinking speed
◆ reduced flexibility in thinking
◆ difficulties with remembering and learning new information
◆ problems with attention and concentration
◆ poor planning and organizational skills
◆ poor reasoning and judgement.
We know that these types of cognitive changes have a much greater impact
on long-term outcome (such as return to work) than physical problems. Families
also tell us that these types of problems cause them the greatest confusion and
distress.
Thinking problems and the severity of the

head injury
The extent of cognitive or thinking difficulties depends to a large part on the
severity of the head injury. Severity is classified by doctors according to the
length of time that the individual is unconscious (GCS) and the time taken to
become fully aware of their surroundings (PTA) (see Chapter 1).
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Chapter 5 · Changes in thinking skills
Mild head injury

After even a mild head injury it is common for individuals to feel confused and
disorientated. In the case of a very mild head injury these problems usually
resolve quite quickly. In some cases, however, small cognitive changes do occur
and these may endure over time. Although subtle, these can have a significant
impact on everyday life, including work (especially if the person is returning to
a demanding job) and family life. The danger is that these subtle problems may
be overlooked because the individual seems to have made a full recovery.
Problems may only emerge when they are faced with unfamiliar or complex
tasks, or if they are tired or under stress. Such mild changes can still cause con-
fusion and worry to individuals, and confidence levels can fall. The impact on
other family members can also be significant.
More severe head injuries

If your relative has had a moderate or severe head injury, he/she is more likely
to experience some degree of difficulty with thinking and memory. Although
these may improve over time, long-lasting changes are much more frequently
seen. Such difficulties can have a major impact on everyday life, restricting
opportunities for returning to work, and can be difficult for families and the
injured person to understand. As with minor injuries, the nature and extent
of difficulties may not always be apparent until later—for example, when your
relative tries to return to work.
Changes in memory abilities

Memory is an extremely complicated, and sometimes misunderstood, system.
What we refer to as memory is actually made up of several subsystems, with
different types of memory being organized in different brain areas. We have
separate memory systems for different types of information, including:
◆ verbal information
◆ visual information
◆ personal events (i.e. what has happened to us throughout our lives)
◆ facts about the world/general knowledge
◆ our memory for skills (like driving and playing a musical instrument).
In addition to these subsystems, we have a temporary memory store which we
use to hold information for very brief periods of time while we do something
with it (e.g. write down a phone number), before it is forgotten or transferred to
a more permanent store.
There are also different stages of memory, any of which can go wrong when
memory is not working properly. First, in order to remember something at a
later time we need to pay attention to it and process it in some way (this stage is
called encoding and involves our temporary memory store), and then we need
59
to rehearse it (repeat it or practice it) or make links with information we already

have in memory in order to store it in our more permanent memory store (this
is called consolidation), before finally getting it back out of our memory when
we need it (retrieval).
Often people draw comparisons between memory and other complex storage
systems (like a complicated filing system). It might help you to try and think
about it as a filing cabinet. New memories may be stored initially for a brief
period in the top drawer (like our temporary memory store) while waiting to be
filed away properly (in the appropriate place with similar files). The process of
filing it away properly in the right place is like the consolidation stage of memory.
Later retrieval will depend on how good your filing system is. For your memory
to work well, you need an efficient well-organized system, storing files on similar
topics together.
How is memory typically affected after a head injury?

Although memory functioning often changes after a head injury, the way our
memories are organized within our brains means that the entire memory system
will not be affected. Someone would not typically lose all their memories and
memory abilities. When we say that someone’s memory is damaged after head
injury, what we mean is that one (or more) parts of the memory system have
become damaged. Others will be completely intact.
We explained in Chapter 2 how in the very early stages of recovery, it is common
for individuals to experience post-traumatic amnesia (PTA). At this stage
their ability to remember any new information may seem severely affected.
This typically resolves over time (although the length of PTA does vary between
individuals). However, when the period of PTA passes, there may be ongoing
problems with memory, particularly if the head injury is severe. Typically, after
a head injury, a person will have most difficulty with the following.
◆ Learning and remembering new information Generally, after head
injury it becomes much more difficult to take on board new information and
lay down new everyday memories. The injured individual may be unable to
learn any new information, may only remember parts of it (their recall is
patchy), or may find learning to be very slow and effortful. Thinking back
to our filing cabinet example, the new files are not being properly stored—
perhaps falling down the back of the top drawer, and never being put into
the correct storage space. Generally, individuals tend to have better memory
for things that happened before the accident (e.g. from their childhood).
◆ ‘Remembering to remember’ This refers to our memory for things in
the future (i.e. remembering to do something, like keep an appointment or
complete a job that needs doing at a certain time). You might hear this
referred to as prospective memory. This type of memory (which involves the
frontal lobes) is obviously important in everyday life.
60
◆ Remembering events leading up to the head injury It is unusual for

people to remember the events leading up to the head injury itself. This
period of memory loss, referred to as retrograde amnesia, differs in length
between individuals. It can range from a few minutes to hours, days, or even
months before the injury occurred. Although this can improve over time,
with individuals gradually regaining some memories, the memory of the
event itself is never retrieved. Individuals are often preoccupied with this loss
of memory and may be distressed by not remembering the event, despite it
being traumatic in nature.
Older memories, memories of general knowledge and facts, and memories

of skills are usually relatively well preserved after head injury.
How are memory problems seen in everyday life?

Because of the complex nature of memory, how your relative comes across to
you and others might sometimes seem contradictory or puzzling. Families often
say that they have been struggling to understand why their relative remembers
events from his/her distant past yet is unable to remember something he/she
heard yesterday. Thinking back to our filing cabinet, imagine that the old memory
files were well ordered previously and thus easy to find; in contrast, the newer
files are being misplaced and never properly filed away.
Your relative may also seem very forgetful, for example forgetting to complete
a job you have asked him/her to do. You might notice that your relative needs
you to repeat information on several occasions and to give him/her frequent
reminders, or they may need considerably more practice at doing something
before it becomes routine. They may also lose their enjoyment of certain activities
(e.g. reading the newspaper or watching a film) if they cannot remember what
they have just read or seen. Consequently, they may find memory changes very
frustrating, upsetting, and disruptive.
Memory also plays an important role in our sense of who we are and how we
view ourselves. Our ‘sense of self ’ depends on having intact and continuous
personal memories—for example, remembering key events and achievements,
such as the birth of children, throughout our lives. Being unable to remember
this type of information, or having ‘gaps’ in our memories, makes it difficult to
retain a clear picture in our minds of the type of person we are or how we have
developed over time. This can be baffling and distressing.
Changes in thinking speed

Thinking speed, sometimes referred to as information processing speed, is the
time it takes for us to process the everyday information that we see or hear, from
initially registering it, to thinking it through, and then responding in some way.
61
Being able to think quickly depends on information being transmitted at speed

along nerve fibres. After a head injury, the nerve pathways throughout the
brain are disrupted and therefore messages take longer to get through. Therefore
a slowdown in thinking speed is very common after a head injury (even after a
mild one).
How is thinking speed typically affected after head injury?

You may find that, after a head injury your relative is unable to do things as
quickly as previously. He/she may be unable to follow a conversation or to make
a decision quickly. As a result of trying to ‘keep up’ it is typical for individuals to
become ‘mentally’ overloaded quite quickly and to become irritable. You may
notice that your relative loses his/her temper more easily, tires quickly, or ends
tasks or conversations more suddenly than usual. He/she may be less able to
cope with the demands and stresses placed on them.
Changes in this area can have a significant impact on the injured individual as
it may mean that he/she is unable to return to work and family roles. Quick
thinking is also essential in driving, and therefore reduced processing speed
may restrict someone’s ability to drive safely.
Changes in attention
Like memory, attention is a complex process. There are many different types of
attention, or attention systems, which we use in everyday life including:
◆ concentrating for a long period of time (on a work assignment or when
watching a film)
◆ multi-tasking
◆ concentrating hard on one thing if there are distractions around (e.g. ‘tuning
out’ background noise from the TV while talking to someone).
The frontal lobes play an important role in all of the above. Particularly in the
early stages of recovery, it is common to see difficulties with all these systems.
Changes in attention can also have a major impact on memory—it is difficult to
learn and remember new information if you do not pay attention to it initially!
In addition, we draw extensively on these abilities when we are carrying out
complex tasks such as driving and in the work environment. Thus changes in
this area can have a significant impact on the individual’s ability to do these
successfully.
How might attentional problems be seen in everyday life?

This will depend on what specific aspects of attention and concentration have
been affected. If your relative has difficulties sustaining their attention, they
may seem to daydream or drift off in the middle of a task, or they may be unable
to follow a film. Their attention span may seem particularly short in the early
62
stages—your relative may only be able to concentrate for a few minutes at

a time.
It is also likely that your relative will find it much harder to cope with or tolerate
distractions around them. You may notice that if someone walks into the room
your relative becomes distracted, or they may be unable to cope with any back-
ground noise, losing the thread of their conversation if someone is talking in the
background. Such difficulties are not restricted to noise only—individuals may
have difficulty if there is a lot of visual ‘clutter’ (e.g. having difficulty focusing on
or finding one thing if there is a lot to look at). In particular, they may find it
hard to tolerate children. At such times, your relative may feel ‘overloaded’ by
all the extra stimulation and noise they are unable to filter out and ignore. They
may then become upset or irritable.
Before the head injury, your relative may have thought nothing of doing two (or
more!) tasks at once—for example, preparing a meal while helping a child do
homework. This can become impossible after a head injury.
Changes in ‘executive abilities’

The front part of our brain, which is very susceptible to damage in a head
injury, plays a key role in our most complex thinking processes. These include
planning, reasoning things out, and getting started on tasks. It also influences
our behaviour by controlling our impulses, and ensuring that it is appropriate to
the situations in which we find ourselves. In fact, it oversees and organizes all
our other cognitive functions and is often thought of as being similar to a chief
executive in a company who takes responsibility for checking that everything is
working satisfactorily (that is why these brain processes are sometimes referred
to as executive processes). If this ‘executive’ is not working properly, we can see
a range of problems. These include loss of flexibility in thinking, impaired initia-
tion (difficulties getting started on things), impaired problem solving, an inabil-
ity to break down complicated tasks into a clear sequence to work through, and
changes in behaviour.
What problems in executive functioning are typically

seen after head injury?
As a result of damage to the frontal lobes, the individual may experience prob-
lems in any of the ‘higher-level’ thinking processes outlined above. In particular,
they may find it difficult to think things through logically and flexibly or be
unable to plan and organize themselves and their work, problem-solve,
and make sound judgements. They may also show changes in behaviour and
personality—for example, individuals may be unable to stop themselves from
saying or doing inappropriate things (e.g. swearing), or be unaware of their
behaviour and its impact on other people.
63
How might executive problems be seen in everyday life?

Problems with higher-level thinking skills including
◆ Perseveration You may notice that your relative’s thinking is quite ‘concrete’
in its style: this means that they may get stuck on one topic of conversation
or task, even if what they are doing is not working for them (i.e. they persist
with this and are unable to switch to a new topic or way of working). This is
sometimes referred to as perseveration.
◆ Planning and organizational difficulties Individuals may also be at a
loss when faced with new or unfamiliar tasks that require planning and
organization. They may find that they get lost or confused when faced with
a job that does not have much structure. Even tasks that were previously
completed fairly easily (e.g. cooking a meal) can become very difficult as
they require the individual to coordinate lots of different steps and timings.
Such sequencing difficulties may also be seen on simple tasks if problems
are severe.
◆ Problem-solving difficulties You may notice that your relative seems to
manage tasks well until a problem is encountered, at which point they may
find themselves stuck and unable to plan what to do next. These changes can
be subtle and may not manifest themselves straight away.
◆ Reduced initiation This refers to a particular problem in starting tasks (e.g.
a household chore). The problem does not lie in the task itself—people with
reduced initiation can usually complete the task successfully once they have
been encouraged to begin the first steps.
Behaviour and personality changes
We know that personality and behaviour changes are common after head injury
and damage to the frontal lobes. Changes include:
◆ disinhibition (e.g. saying hurtful things, swearing, being unable to control
angry impulses)
◆ egocentricity (becoming very focused on their own needs and unable to
consider others)
◆ impulsivity (acting quickly and without full consideration of what the indi-
vidual is about to do)
◆ passivity (e.g. becoming withdrawn; showing no emotional response).
We know that such changes are particularly upsetting for families, more than
any other changes associated with head injury. These are outlined in more detail
in Chapter 7: ‘Changes in emotions and behaviour’.
Reduced awareness
Sometimes after a head injury, people show no or only very limited awareness
(or insight) of their difficulties—for example, they may not recognize that they
have memory problems, that their speech is unclear, or that they are unable to
64
walk safely. This is not always an all-or-nothing phenomenon. Individuals may

show awareness of some changes but not all. Consequently, their judgement
may be poor and they may inadvertently place themselves in risky situations
(e.g. trying to get back to driving).
Reduced insight means that your relative may not be aware of some of the changes
that you, other relatives and friends, or professionals are noticing. For example,
your relative might want to do something that you know they are currently unable
to do (like make a hot drink or climb the stairs). Your attempts to protect them
(whether from danger or simply failing on a task) may be misunderstood by
them and taken as attempts to hold them back—this can lead to feelings of resent-
ment and anger. Your relative may also have reduced insight into changes in their
behaviour, thus creating some social difficulties and awkward social situations.
This can be extremely distressing for all and a source of considerable tension
within the family.
Reduced awareness or denial?
Changes in awareness are directly related to the brain injury itself and the areas
of the brain affected (the frontal lobes). This is quite different from the more
psychological phenomenon of denial. Denial is when the individual is aware of
the changes experienced but does not want to admit to or think about them.
Denial is not necessarily harmful. It can often be helpful in the short term as it
may protect someone from becoming depressed or anxious, but in the longer
term it may cause more problems. It is sometimes difficult to tease these two
out. Sometimes the picture is even more complicated as the two can occur
together.
Changes in visual perception

Perception refers to how the brain makes sense of information coming in
through the senses. An uninjured brain is normally able to interpret accurately
the visual information coming in from the eyes along the optic nerve. This infor-
mation is used to make judgements about what we see—for example, to recognize
objects even if we look at them from unusual angles and views. The important
brain areas involved in these processes are the occipital and parietal lobes.
After head injury, individuals may have difficulty in recognizing a range of
visual information, although this is not a particularly common consequence.
How are visual perception difficulties seen in everyday life?

Your relative may have difficulty in recognizing objects if they are not in their
usual places or are placed at a funny angle (e.g. if their clothes are in a jumble
or their reading glasses are put down in an unusual place). In contrast, if they
are laid out clearly and in a familiar place, they can easily identify the same
objects. As their eyes are working perfectly well, glasses will not help correct this
type of problem.
65
Changes in visuospatial skills

These are the skills we use to make spatial judgements e.g. judging how near
something or someone is, judging depths, constructing objects and putting
things together (e.g. DIY projects), and finding our way around indoors and
outside (e.g. following simple routes). Again, these processes involve the occipital
and parietal lobes.
How are spatial difficulties seen in everyday life?

Difficulties with spatial skills may result in individuals over- (or under-) reaching
for things, having problems judging the depth of steps and stairs, or being
unable to judge how far away an approaching car is when crossing the road.
These can be very frightening and confusing experiences. They may also become
disoriented when they are out or when trying to find their way around a building,
or when trying to follow a map. In addition, DIY tasks and other jobs that
require visualizing where things need to go are much more difficult.
Other cognitive difficulties

Other cognitive difficulties less commonly seen after head injury include those
mentioned below.
Agnosia/difficulties in recognition
This relates to difficulty in recognizing objects even though they can be seen
perfectly well. In these cases, the individual has lost his/her ability to recognize
and identify previously well-known objects. Visual agnosia can be confusing and
disorientating, and may be difficult to spot initially.
Apraxia
This relates to problems in carrying out particular movements (e.g. cleaning
teeth, getting dressed). Specific difficulties are experienced in thinking about
and planning movements. Such difficulties may be caused by other problems
(e.g. physical limitations) and these must be ruled out before diagnosing apraxia.
As a result, the injured individual may find it hard to follow commands or com-
plete tasks in a certain order. This may sometimes look like clumsiness.
Visual neglect
After a head injury, individuals can sometimes be unaware of one side of space
(ignoring things on one side, or ignoring one side of their body). This is a form
of attentional problem and is called neglect. Visual neglect is relatively unusual
after head injury.
Coping with changes in thinking skills

In the early stages of recovery, family members are understandably most focused
on medical and physical issues, and questions such as ‘Will my relative ever
66
regain consciousness?’ and ‘Will my relative pull through?’ dominate. After this
stage, relatives start to ask ‘Will he/she ever walk or talk again?’ Concerns about
cognitive (thinking) changes tend to occur slightly later still. If such changes are
subtle, families may only become aware of them after some time (perhaps after
their relative returns to work). Even with more severe changes, the full impact
of these difficulties is only really likely to be felt on return to the family home.
If your relative is experiencing some form of change in their thinking abilities,
you might be very worried and confused about the nature of these changes,
especially if you do not fully understand what is happening to your relative or if
you have not received information on these problems. Depending on the nature
and severity of the difficulties, you might have additional worries about leaving
your relative alone for safety reasons, worry about them returning to work, or
about how they are coping with everyday stressors. Dealing with this can be
extremely tiring and frustrating.
Ways to help your relative with cognitive problems

As discussed in Chapter 2, we expect to see improvements over time as the
brain spontaneously mends. During this process of natural recovery (which is
most marked over the first year or two) improvements in cognitive functioning
are likely. However, it is impossible to predict how much recovery there will be
and when this will stop. It is realistic to say that, with more moderate and severe
head injuries, persisting changes in some areas of cognition are likely.
Unfortunately, there is not a great deal that you or your relative can do to have
a direct influence on the natural recovery of most of these thinking and memory
functions. While there is some evidence that attention can be exercised or ‘trained’
to improve, you generally cannot speed up the process of recovery by regularly
exercising and testing out other functions like memory. Research shows that
this type of approach usually does not help much in reducing the impact of
such difficulties in everyday life or cure these problems. If your relative has
received specialist rehabilitation you may already be familiar with this idea. You
may have been told that memory is not like a muscle that can be strengthened
by repeatedly exercising it (e.g. by using memory games). If you have not had
contact with rehabilitation professionals, this may be a surprising message
to hear. You may find it upsetting or frustrating, as it can sound as if there is
nothing you can do to help your relative. However, this is not the case.
Q Myth Repeatedly exercising memory and other areas of cognition

helps ‘cure’ problems by restoring functioning in those areas.
01 Fact Cognitive processes, such as memory, improve spontaneously
over time independently of what you do. It is more helpful to practise
everyday tasks rather than more ‘abstract’ games.
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What can help?

While it is certainly not worth you spending all your time encouraging your
relative to ‘exercise’ their memory repeatedly, there are still many other useful
things you can do which can improve the situation and help you all ‘bypass’ and
cope with the changes. Even in the case of attention, where repetitive exercises
may be recommended to improve functioning, this would just be one approach
adopted. It is also important to look at other ways to reduce the impact of prob-
lems with attention in everyday life.
It is important to seek personalized information about your relative’s head
injury and understand the specific cognitive difficulties they are experiencing.
This is because every head injury is unique and the difficulties experienced can
be so varied. Rather than ask ‘Does my relative have a memory problem?’, ask
‘What types of things is my relative finding difficult to remember?’, ‘How severe
is the memory problem?’, ‘Is his/her memory for other things OK?’, ‘How will
we be able to help him manage these memory problems?’, and ‘Who can advise
us on this issue?’. Finding the answers to these questions can guide you towards
the strategies that will be most effective in your relative’s case.
Resources which provide more detailed information and advice for dealing with
particular patterns of cognitive problems are listed at the end of this book.
However, we provide some very general guidance below.
Whatever the type of cognitive change you have noticed, we know that the general
recommendations outlined in Chapter 1 should be helpful. Making some basic
changes to your relative’s home and work environments (e.g. reducing distrac-
tions) and using a range of simple compensatory strategies and aids (such as dia-
ries and lists, or a dossett box to aid taking medication) can have dramatic effects.
A dossett box, for example, is a simple plastic box that has separate spaces for
each day’s medication. This can be filled up in advance and can reduce the like-
lihood of your relative forgetting to take or mixing up their daily medication (thus
enhancing their control and independence in this area). In addition, providing
more time to complete everyday tasks, planning ahead, and having a predictable
routine to the week can all help to reduce pressure and tension within the family.
We noted earlier that some people have reservations about adopting these types
of approaches. People often think that it is better for their relative to be ‘pushed’
to try things out without any help or clues—even if this means that they will
make mistakes. For example, some people might think that it is better for their
relative to guess where something is (thus testing their memory) rather than put
up a label on a cupboard (which may feel like cheating or making things too
easy for the person with memory problems). You often hear people say ‘If you
don’t use it you’ll lose it’. However, this is not accurate.
In the case of memory problems, we know that using memory aids (like a diary
or a wall planner) and finding other ways of getting around memory difficulties
68
is much more effective than trying to exercise memory by doing repetitive tasks
and tests. We know that using memory aids is in no way detrimental and does
not hinder any natural recovery of memory that may occur. On the whole, it is
much better to use strategies and support individuals with memory problems in
such a way that they do not have the opportunity to guess and make mistakes
when they are trying to learn something or do something new. Why?
We know that with more severe memory problems, learning is best achieved
by repetition and routine. This is somewhat different to how people with-
out memory problems learn. We are much more likely to learn through
trial and error (i.e. learn through making mistakes). However, this only
works for us because we can remember the mistakes we made next time
we are in the same situation—and we can then do something different!
In contrast, if you cannot remember your mistakes, being allowed to get
things wrong can cause many additional problems (the mistake can actually
get in the way of learning the right response).
Some of the self-help resources listed at the end of this book include informa-
tion on practical strategies to address thinking and memory problems. It is
important to look through these to get some ideas, and then try some out to see
what works best for your relative and the family. If your relative has only mild
difficulties, they may be able to use these resources themselves to develop their
own strategies. If their problems are more severe, other family members may
need to take a lead role in this.
In some cases (if the problems are complex, difficult to understand, or severe)
a formal assessment by a specialist professional such as a clinical neuropsychol-
ogist may be useful. He/she will undertake tests that will help identify the exact
nature of your relative’s difficulties and advise you on the strategies that will be
most helpful.
Ways to help yourself

It can be very frustrating and draining to support someone with significant cog-
nitive problems. Family members often describe how their relative’s cognitive
changes have a major impact on everyone in the family. Resulting changes for
family members frequently include having to be more vigilant about their rela-
tive’s safety, taking an increased role in organizing and ‘remembering’ for that
person (e.g. reminding them of things they need to do), and constantly trying to
motivate or encourage their relative to do more. As described in Chapter 9,
family roles and duties may also change significantly, especially if your relative
has been unable to return to work or resume domestic duties such as managing
finances or helping the children with their homework. Family members may
also feel the effects of cognitive changes in other ways. For example, their relative
69
may forget important birthdays and anniversaries, show a lack of interest in

everyday events (such as children’s school events/achievements), and display
much higher levels of irritability than previously. Everyone (particularly chil-
dren) may need to adapt their behaviour (e.g. being much quieter than before)
in order to reduce the problems experienced. These changes in family life can
be difficult to adjust to, effortful, and tiring.
It is important to understand fully what is happening in order to prevent family
members misinterpreting or ‘taking personally’ issues arising out of cognitive
problems. Remember that, although extremely frustrating, memory lapses and
other problems caused by changes in thinking abilities are not deliberate—
making mistakes and forgetfulness are symptoms of the head injury.
It can be helpful to talk to wider family and friends about the cognitive problems
your relative is experiencing so that they also understand and can provide support.
It may also ensure that they do not place unnecessary demands and stresses on
your relative, which can have a knock-on effect on you and the rest of the family.

◆ Will my relative’s memory ever improve?
After a head injury we expect to see some changes over time as the
brain spontaneously mends. During this process of natural recovery
(especially over the first year or two) improvements in all areas, includ-
ing cognition, are likely. We know that cognitive problems tend to
recover more slowly than physical problems. However, it is impossible
to predict how much recovery there will be after a head injury and when
this will stop. It is realistic to say that with more moderate and severe
head injuries long-term enduring change in some areas is highly likely,
and 100% recovery is highly unlikely. However, this message about
recovery is not as bleak as it sounds. Often families report changes for
many years after the head injury as people continue to adjust to and
find ways around their difficulties. Even when spontaneous recovery
slows down or stops, there are ways of managing cognitive problems so
that everyday functioning continues to improve.
◆ Will my relative remember what has happened to him/her?
This is a question that can cause family members much worry, especially
if their loved one sustained their head injury in very traumatic circum-
stances. Although older memories are usually well preserved, it is unusual
for people to remember the events leading up to the head injury itself. This
period of memory loss, referred to as retrograde amnesia, differs in length
between individuals and can be hours, days, or months before the injury
occurred. In all cases, memory for the accident itself is never retrieved.
70
◆ Why do my relative’s difficulties seem to vary over time?

Cognitive difficulties may become much more evident when your relative
is tired or is feeling physically unwell. From your own experiences, you
will know that it is harder to concentrate or learn new information when
you are tired or unwell, even if you do not normally have problems in
these areas. This effect is magnified after a head injury. In addition, factors
in the home and work environment may exaggerate the difficulties—for
example, if the office is very noisy or there are lots of people visiting at
home, your relative may find it harder to cope with tasks that he/she is
usually able to do without too much difficulty.
◆ I’ve been told that exercising memory doesn’t help, but shouldn’t
I be encouraging my relative to keep their mind stimulated?
It certainly won’t do any harm to encourage your relative to engage in
activities that they enjoy and find stimulating (e.g. puzzles, reading). Just
be aware that putting a lot of effort into memory games and activities
is unlikely to result in changes that can be seen in everyday life.
◆ How will we know if strategies are working?
Signs that strategies are effective might include finding that your relative
is experiencing more success in everyday tasks, that you are having to
prompt them less, that they are showing fewer signs of frustration and
distress, or that stress levels within the family are not so high.
◆ ‘My relative doesn’t seem to be aware of the problems he has with
concentrating and remembering. How can I help him understand
that he can’t do some of the things he used to do easily?
This is a particularly hard area for family members to address. We know
that after head injury individuals sometimes show no or only limited
awareness of the changes experienced. They may not fully appreciate
what has happened to them and what their current abilities are—thus
they may place themselves in risky situations. Families are often trying
to get the balance right between being encouraging (and maintaining
their relative’s independence), and giving their relative realistic feedback
about their difficulties and keeping them out of danger. If your relative
has poor awareness of their difficulties, they may get angry and upset,
and may see you as being overly critical. Giving them feedback on areas
of difficulty is best done slowly and sensitively, with support or back-up
from professionals. Information and feedback from health care profes-
sionals who know your relative well (if they are receiving rehabilitation)
can be useful and may redirect anger and frustration away from you or
other family members.
71
6
Changes in speech,
language, and
communication
06 Key points
◆ Difficulties with communication can result from damage to the parts of
the brain responsible for speech and language.
◆ The severity and type of disorder seen will depend on the location and
extent of damage.
◆ There are several types of communication disorder, affecting different
aspects of speech and language. A combination of these can occur after
head injury.
◆ Speech, language, and communication difficulties can have a major
impact on everyday life, and can cause frustration and distress for fam-
ily members.
◆ A speech and language therapist (SALT) can help assess the nature of
communication disorder and help you understand how to facilitate
communication with your relative.
Common speech, language, and communication

difficulties after head injury: an overview
There are several different types of communication disorder that can result
from damage to the brain. The type and severity of these problems will depend
on:
◆ the location and extent of the brain injury
◆ the severity of the damage
◆ the stage of recovery.
In most people the key areas of the brain responsible for controlling speech and
language are located in the left hemisphere (side) of the brain. However, the right
73
hemisphere controls other communication skills, and control of the muscles of

speech depends on several different areas of the brain.
The types of communication disorder that can occur following a head injury
are:
◆ aphasia (sometimes called dysphasia)
◆ verbal dyspraxia
◆ dysarthria.
It is quite common in head injury to see a combination of these disorders, espe-
cially in the early stages of recovery. This is because head injury affects diffuse
areas of the brain, rather than a precise location as may be seen following a
stroke.
Aphasia
Aphasia is a speech and language disorder which can affect all aspects of
language:
◆ understanding what is said to you
◆ the ability to find words and sounds to speak
◆ the ability to read and write.
There is a wide range of severity and types of aphasia and each individual will
present slightly differently. It can be very frustrating for a person who is aphasic
(and their relatives) as the person is often fully aware of what they want to say
and their intelligence is intact, but their ability to communicate is impaired.
A person with aphasia described it as feeling as though ‘their computer was
working fine but the connection to the printer was broken’.
The effects that aphasia might have on your relative are shown in Table 6.1.
Verbal dyspraxia
Verbal dyspraxia is the name given to another speech problem that is usually
seen alongside aphasia to some degree. It relates to a difficulty in programming
and sequencing the movements of the speech muscles to make speech sounds
and sequence those sounds in words. In mild dyspraxia there may just be mild
sound errors in words or difficulty in saying long complex words. In severe dys-
praxia (sometimes called apraxia) the person is unable to make any deliberate
speech sounds at all.
Dysarthria
Dysarthria is a speech difficulty caused by weakness or difficulty in moving
and coordinating the muscles used for speaking. These include the respiratory
muscles (muscles for breath control), larynx (voice box), soft palate, tongue,
and lips. These muscles produce voice and speech sounds in rapidly coordinated
74
Table 6.1 Effects of aphasia
Mild to moderate difficulties Severe difficulties
Understanding Things that are heard or read Person is able to follow short spoken phrases but Person has difficulty understanding
(receptive difficulties) has difficulty following long complex instructions or anything that is said to him/her, even
information spoken to him/her single words
Reading Ability to read may be preserved in Able to read single words or short phrases (e.g. newspaper Unable to read single words and
some individuals after a head injury but their headlines), but unable to read, process, and retain long understand them
Chapter 6 · Changes in speech, language, and communication

ability to understand and make sense of what paragraphs
they are reading can be impaired; this can cause
them some confusion
Speaking Expressive difficulties Occasional to frequent difficulties in finding the correct Unable to express themselves
word that the person wants to say; occasional to frequent verbally at all
use of incorrect words or mispronunciation of words
causing speech to be less fluent. A person may have
additional verbal dyspraxia. The person may be able to
speak occasional single words or short phrases only, or
they may be able to speak fluently but the majority of the
words do not make sense
Writing This can be affected by aphasia, which May be able to write words and sentences but makes Unable to spell or write single words;
may be in addition to any difficulty the person occasional spelling errors in less severe cases may be able to
might have in controlling the hand for writing. write or point to the first letter of a
word on an alphabet chart
75
movements when we speak. In pure dysarthria a person’s language (ability to

find words and sequence them into a sentence) is intact but their ability to
speak is impaired at the levels of breath control and/or of voice and speech
production.
◆ Mild dysarthria A person is able to speak in long sentences but their speech
sounds slightly slurred as their articulation is affected. Their voice may be
slightly altered (e.g. slightly gruff, quiet, nasal, or over-loud) or their intona-
tion and prosody (e.g. the rhythm, stress placement in words and sentences,
and variations in tone and expression in the voice) may be affected—for
example, they may sound monotone and flat or their speech may have a jerky
rhythm.
◆ Severe dysarthria In its most severe form a person is unable to move their
speech muscles voluntarily at all and therefore is unable to speak (this is
called anarthria). This is often accompanied by severe eating and swallowing
difficulties (see Chapter 4). In a slightly less severe case a person may be able
to make occasional speech sounds or single words.
The impact of cognitive problems on

communication
The cognitive difficulties typically associated with head injury (such as problems
with memory, organization, planning and sequencing, drawing inference, and
reasoning) can all have a significant impact on a person’s communication skills.
For example, they can affect conversation skills such as being able to listen, take
turns, and retain and process (make sense of) what someone has said, and the
ability to plan and sequence their response. These difficulties may be very obvious
or subtle.
People in low awareness state
It may be that your relative has sustained a very severe brain injury and remains
in an apparently uncommunicative state (different levels of awareness and
responsiveness after head injury such as coma, low awareness states, and
vegetative conditions are described in Chapter 2). Having a relative with this
type of difficulty raises obvious concerns about communication. Families are
frequently concerned about how best to communicate with their relative, how
to establish what their relative understands and is aware of, and how communi-
cation can be improved. Some families can feel very despondent and disheart-
ened about communicating with an apparently unresponsive relative and may
‘give up’ talking to them if they remain in this state for some time. This is an
extremely stressful time for all involved as it is often very difficult to know for sure
how much a person who is in a low state of awareness can hear and understand.
It is not uncommon for families to feel as if the hospital staff are ‘missing’ the
injured person’s efforts to communicate, or that the staff do not believe their
76
reports of their relative’s attempts to communicate. It can be a time of conflict

and upset, but it is important to try to work together to gain a broad picture of
the injured person’s communication abilities. There are several useful assess-
ment tools (based on very close and frequent observation of the injured person)
that can help to monitor changes in a person’s level of awareness and ability
to communicate. Head injury rehabilitation staff can advise you further about
these.
Ways to help your relative with communication difficulties:
People who experience speech and language difficulties often describe them as
one of the most frustrating and upsetting problems following a head injury.
Communication difficulties can cause a great deal of frustration, distress, and
upset in family relationships. You might find, for example, that others in the
family automatically speak for the person with the communication difficulty,
bypass them in conversation, or constantly correct their speech. Family mem-
bers might lack the patience to deal with the communication difficulties, or be
reluctant to accept and use other means of communication. The individual with
the communication difficulties may also express more feelings of frustration
when experiencing problems communicating with others—and may become
more withdrawn or reliant on other family members as a result.
In the acute stages following head injury a person who is experiencing commu-
nication difficulties should be referred to a speech and language therapist
(SALT). Your GP should be able to organize this. A SALT is able to assess the
nature and severity of communication difficulties and provide advice and guid-
ance on how to help the person communicate. During the rehabilitation stages
there are a wide range of speech and language therapy approaches and strategies
which may aid recovery and help the person communicate, depending on the
nature and severity of the difficulty. Talk to staff about the strategies that will be
most helpful for your relative.
A general principle is to think of communication as more than just speech.
Gesture, facial expression, writing, eye movements, looking at or pointing to
written words, or drawing pictures can all be very communicative. Encourage
and accept all means of communication open to someone (often called total
communication), and do not be afraid to use them yourself. Initially it can
feel ‘silly’ or embarrassing to be using lots of gestures or drawing information
that you want to communicate, but once you have got used to using these
strategies your relative is likely to gain a lot of benefit from them.
If your relative has difficulty in understanding what others say, try the
following.
◆ Use short phrases, one at a time.
◆ Support what you say by writing down key words.
77
◆ Use natural gestures to support your speech (this may be easier to

understand).
◆ Use pictures of the key topic or item to support your speech (to support
understanding of the words).
◆ Reduce background noise and distraction (e.g. turn off the radio when talking,
and avoid several people talking at once).
◆ Signal a change in topic of conversation clearly.
◆ Provide key information written down in short phrases, and highlight key
words.
If your relative has difficulty expressing him/herself, try the following.
◆ Allow time.
◆ It may help to ask closed questions, i.e. questions that can be answered with
‘yes’ or ‘no’.
◆ The person with expressive difficulties may be able to write or spell out the
first letter or whole words on an alphabet chart.
◆ Write down options for your relative to point to (to assist in choice-making).
Help your relative to answer open questions by providing written single
word/short phrase options to select from (e.g. for the question ‘What did you
do at the weekend?’, write out options such as ‘stayed at home’, ‘went for a
drive’, ‘trip out’, ‘visitors’).
◆ Similarly, use pictures to help communication.
◆ A communication chart or book of key words or pictures to communicate eve-
ryday needs or about the person’s family, likes and dislikes, interests, area they
live, etc. may assist communication. A SALT can advise on compiling this.
◆ Encourage all means of communication, e.g. the use of gesture, writing, or
drawing to support speech.
◆ Keep a pen and paper to hand to enable easy use by someone in conversation
with someone with speech difficulties.
Use of some of the strategies outlined above (adapted to your relative’s particular
pattern of difficulties) can help reduce some of the feelings of frustration and
distress you may all be experiencing.
Specialist communication devices

The general strategies listed above include what we call low-tech communication
aids. These are simple aids to communication (such as communication books,
picture or word charts) and props that you can develop to act as ‘ramps’ to assist
in communication, much like a ramp up a step assists mobility. These can include
pictures, photos, and maps that centre around a topic of conversation.
There is also a wide range of higher-tech (electronic) communication aids,
which are sometimes recommended after specialist assessment by a SALT.
78
One example of such a specialist communication device is a lightwriter. This

is a small text-based aid with a screen that displays a typed message to the per-
son to whom the injured person is ‘talking’. Other examples include computer-
based systems accessed via a switch. These switches can be adapted to overcome
physical problems (such as problems with moving a hand) so that the switch is
operated by a head movement (if the injured person is able to this).
Coping with a relative in an uncommunicative state

As outlined earlier, a small number of people with severe head injury may not
recover their ability to communicate and may appear to remain in a minimally
aware and uncommunicative state. This can be distressing for families to under-
stand and cope with. Staff working with your relative can advise on particular
strategies that might be helpful but in general the following can be useful.
◆ Continue to talk normally to your relative, although we acknowledge that it
can be very difficult to maintain this over time, especially if the person does
not appear to be making further recovery. It is especially important to try to
keep your relative informed about what is going on and what their treatment
involves. Many families wonder whether it is helpful to give the injured per-
son detailed information about what has happened to them. It is difficult to
give general advice on this issue and should be considered on an individual
basis. Generally it is probably adequate to tell them that they have had an
accident, that they are in hospital and being looked after, and that family are
present.
◆ Try your best to keep all communication clear, simple, and relevant to their
interests and preferences (e.g. share news about family members, give them
updates on how their favourite football team is doing). Use ‘total communi-
cation’ principles by bringing in taped recordings of family messages, favourite
music, and photographs.
◆ Try to avoid ‘non-specific’ ways of communicating such as noisy ‘toys’ or
flashing lights. It can be tempting to think that these might ‘stimulate’ your
relative into communicating again, but they are more likely to tire and confuse
them, making communication more unlikely. It is also helpful to avoid trying
to stimulate your relative with toys and games that are not appropriate for
their age. Encourage other family members to do the same.
◆ Try to be patient and work towards small improvements over time. Head-
injured people do not generally wake up from coma in the way portrayed in
Hollywood films.
◆ Make sure that you have support for yourself and your family.

Problems with communication can be extremely frustrating and upsetting for
the whole family, as well as for the individual with these difficulties. As the people
79
closest to the injured individual, and perhaps spending most time with them on
a daily basis, family members are most likely to be affected by problems with
communication. For example, you might find it draining to think constantly
about what and how you communicate with your relative or having to work
much harder to establish what they are trying to say to you, especially as talking
to each other is something we very much take for granted. You might also find it
upsetting if you see your relative becoming frustrated, isolated, or less confident
as a result of their communication difficulties.
Hopefully, the types of approaches outlined above will help you and your rela-
tive to reduce frustration and maximize your relative’s ability to communicate
with you. It can also be very helpful to talk to others (e.g. friends and the wider
family) about the communication problems your relative is experiencing so that
they also understand and can provide some support. Sharing strategies and
ways to support and facilitate communication with your relative may help both
parties enjoy their interactions more, reduce frustration, and help maintain
their old relationships.
Taking time out for yourself can also give both you and your relative a break
from each other and make your time together more positive.
Get specialist support from others if you feel that you do not fully understand
what the difficulties are or you feel that you are not managing them well.
You can approach your GP or head injury service (if one exists in your area), or
contact one of the support organizations suggested at the end of this book.
Remember that a SALT can provide specialist advice that is tailored to your
relative’s individual needs.

◆ Will my relative’s speech ever improve?
Recovery and improvement of speech and language disorders depends,
like other problems after head injury, on a number of factors, and dif-
fers for each person. Factors affecting improvement include:
◆ the type of speech problem
◆ the severity of the disorder
◆ the ability of the person to engage in and respond to therapy
◆ the presence of other difficulties that may affect recovery e.g. cognitive
difficulties or medical complications
◆ support and communication opportunities.
Although your relative’s ability to communicate may improve with time,
it is important to find ways around any ongoing difficulties using compen-
satory strategies and techniques such as those discussed in this chapter.
80
You might find, that after head injury you have to communicate in a
different way with your relative. Use of pictures or writing to aid
communication is not going to hinder recovery in any way and these
may provide valuable ways of maximizing your relative’s ability to
express him/herself and reduce any feelings of frustration.
◆ Will it help to practice writing the alphabet?
This depends on the nature of the speech problem. Writing practice may
help some people, but for others this can add to frustration and gain
nothing. Seeking specific advice from a speech and language therapist
(SALT) is advised if you are unsure about this.
◆ Will it help to read to the person?
If you are able to ask the person with the communication problem
whether they would like this, then please ask. Some people who enjoy
reading the paper or a magazine, but now struggle to do so, may find
this enjoyable, especially if you are able to have some form of discussion
about an article afterwards. Keep communicating.
◆ Will it help to raise my voice?
No, unless there is a hearing problem. People with speech problems
often report that other people speak to them loudly or treat them as if
they are ‘stupid’ and this is very insulting. Speak to your relative in a
normal calm voice, and if the person has problems with understanding,
it may help to ask one question or give one piece of information at
a time.
◆ Where can I get more speech and language therapy?
If you feel that you and your relative need specialist assessment and
advice from a SALT, contact one of the organizations mentioned earlier
(details are provided at the end of this book) or ask your GP or head
injury service to find out what services exists in your area and how to
access these. Community speech and language therapy services tend to
be stretched thinly, so you may not get as much input as you would like.
Sometimes, however, it is not more speech and language therapy that is
needed but help with coming to terms with living with a communication
disability (along with other acquired disabilities).The charity UKConnect
can provide excellent information, publications, and courses (see www.
ukconnect.org). Again, details are at the end of the book. Support from
counselling and psychology services may also be helpful.
81
7
Changes in emotions
and behaviour
06 Key points
◆ Changes in behaviour and emotions often occur after a head injury.
◆ The causes of such changes are often ‘invisible’ to others and not easily
understood.
◆ They are typically the most upsetting consequences of head injury for
relatives and are associated with poorer long-term outcomes.
◆ The changes seen relate to the areas of brain damaged. They also arise
for other reasons (e.g. reactions to the consequences of the head
injury).
◆ Although these problems are challenging and stressful, their impact
can be minimized by making some changes to the environment and
altering the demands placed on the person with a head injury.
If you feel that you are unable to cope with these changes, or feel in any
way unsafe, seek support from professional services via your GP.
Common emotional and behavioural changes after

head injury: an overview
A head injury often has a significant effect on a person’s emotions and behaviour.
After head injury, changes in emotional responses to situations, and the ability
to control emotions and behaviour can all occur. These difficulties have been
shown to be the hardest for families to cope with.
Common emotional reactions after brain injury include:
◆ depression
◆ anxiety and fear
◆ anger
◆ frustration
◆ mood swings and feeling less in control of emotions than previously.
83
Common behaviour changes include:

◆ apathy or reduced motivation
◆ increased irritability
◆ aggressive behaviour (physical or verbal)
◆ socially inappropriate behaviour (e.g. swearing, saying hurtful things to
people)
◆ trouble relating to others
◆ restlessness/agitation.
The actual changes seen, and their severity, depend on a range of factors including
the severity of the head injury, the areas of brain damaged, your relative’s situa-
tion (e.g. how able they are to return to work and home duties), how your relative
copes with stress, and the type of person they were before the head injury.
You may notice that your relative’s reactions to situations has changed (e.g. they
may be less tolerant of others and be much more irritable than previously), or
they may be reacting to situations in a similar but much more pronounced way.
Many people feel as though their relative’s personality has changed.
Like the cognitive changes described previously, these emotional and behav-
ioural changes are often difficult to understand and cause high levels of distress
for all concerned. These changes may not be obvious initially, or may be put
down to other reasons (e.g. the stress of being in hospital).Your relative may have
come home without anyone talking to you about these issues. In addition, the
causes of emotional and behavioural changes are ‘hidden’ (especially if the person
has no physical problems) and thus are hard for others to understand and know
how best to provide you with support. Therefore these changes may be over-
looked or misinterpreted by others. It can be very difficult and exhausting to live
with someone whose behaviour is unpredictable and difficult to manage, or who
is showing high levels of emotional distress. Often these feelings and behaviours
are directed at you and other family members, as the people closest to them.
Why do emotional and behaviour changes occur?

A variety of factors contribute to the changes described above (Figure 7.1).
The direct effects of the head injury

First we have the direct (or primary) effects of the head injury itself. Damage to
the areas of the brain that regulate our emotions and behaviour (particularly the
limbic system and the frontal lobes) can result in significant changes. Chemical
imbalances within the brain, which may directly influence mood, can also arise
after head injury.
Unfortunately, the brain areas most involved in controlling behaviour, the frontal
lobes, are also the most vulnerable to damage. They are particularly important
84
Chapter 7 · Changes in emotions and behaviour
INDIRECT DIRECT (primary) EFFECTS

(secondary) Biological changes/areas of
EFFECTS brain damaged
1. Reactions to injury
and its consequences
2. Impact of cognitive
changes
3. Impact of physical EMOTIONAL AND
changes BEHAVIOURAL
CHANGES
UNRELATED
FACTORS
Individual coping
style and personality
Figure 7.1 Causes of emotional and behaviour changes
in the moderation of behaviour, i.e. playing a role in inhibiting (stopping) our

responses (e.g. saying something that would be embarrassing or upsetting to
others) and being aware of ourselves and our behaviour (insight) and its impact
on other people.
The indirect effects of the head injury

There are also secondary or indirect effects of the head injury. These include
the following.
◆ The psychological reactions to the injury and its consequences It is
important to remember that your relative has experienced a sudden trau-
matic event. As a result they may be coping with a great deal of uncertainty,
may feel out of control, and may be unable to do things that they used to do.
Thus it is understandable that they may be experiencing a whole array of
emotions, including low mood, anger, anxiety, and frustration, as well as
reduced confidence and loss of self-esteem.
◆ The impact of cognitive changes Cognitive problems can also contribute
to emotional and behavioural changes. If the injured individual has slowed
thinking speed, impaired attention, or memory difficulties, they may find
that they have fewer thinking resources to work through problems and deal
with stresses. This will make them more prone to irritability or displaying
angry outbursts. Feeling confused, disoriented, or being unable to remember
things can also give rise to feelings of distress. In addition, cognitive changes
85
can result in a loss of confidence in one’s abilities leading to emotional

problems.
◆ The impact of physical factors Physical changes, which include fatigue,
sleep problems, incontinence, and pain, may have a large influence on mood.
Unrelated factors
Finally, the picture seen after a head injury will also depend on factors specific
to that individual that are unrelated to the head injury. These include the indi-
vidual’s personality traits and how they usually cope with stress. Some of us are
more prone than others to emotional disorders such as anxiety and depression.
It can be very difficult to identify one particular cause for the changes seen and
often a combination of factors is responsible.
Emotional disorders
Depression
Depression is a common emotional response after head injury. We know from
research and clinical experience that the rate of depression is significantly
greater among people with head injury than among the general population.
It is estimated that approximately half of people experience depression at some
stage after a head injury. Although it can occur at any stage, it is more common
in the later stages of recovery (as recovery rate starts to slow down or plateau).
In fact, your relative may be protected from depression in the early stages of
their recovery if they have reduced insight (see Chapter 5). They may become
more prone to depression as insight improves and they realize the long-term
nature of their difficulties, or when they are faced with their difficulties on an
everyday basis.
Someone who has had a head injury may become depressed for a variety of
reasons. These fall into the broad categories outlined earlier. Depression may be
due to direct changes to the brain (e.g. disruption in the brain chemistry) or
indirect psychological factors (e.g. the possible loss of their job, their roles
within family, future plans, loss of friendships, and loss of themselves as they
were before).
The term depression is sometimes used inaccurately. It is important to be aware
that depression is different from short episodes of feeling low, and requires dif-
ferent action. Fluctuations in mood and periods of feeling low and tearful are
common reactions after head injury, and can occur without your relative actually
being ‘clinically’ depressed. Depression is much more severe—it endures over
time (at least 2 weeks) and prevents the individual getting on with day-to-day
life. Symptoms of depression include:
◆ feelings of great sadness
◆ feelings of hopelessness about the future
86
◆ reduced ability to concentrate

◆ loss of interest and motivation
◆ changes in appetite
◆ problems sleeping
◆ suicidal thoughts and feelings.
It can sometimes be difficult to diagnose depression after a head injury, as many

symptoms, such as poor concentration and irritability, are the same for both
head injury and depression. Professional support and advice—from your relative’s
GP in the first instance—may be necessary in order to assess this properly.
If your relative also has difficulties in speaking and communicating how they are
feeling, it can be particularly difficult to ascertain whether they are depressed.
If you are concerned that they are showing some signs of being depressed,
raise this issue with their doctor or other health professionals involved in their
care. Support from a speech and language therapist (SALT) may be necessary
in such cases.
Anger and irritability

Some people describe living with their relative after injury as being like ‘walking
on eggshells’ in order to prevent angry outbursts. Again, there are many potential
reasons for this change. Anger problems may arise directly from the brain damage
itself; damage to the frontal lobes can result in poor anger control. In contrast,
your relative may be expressing feelings of anger and frustration in reaction to
their circumstances and the things that they cannot do. Outbursts may also reflect
cognitive changes and reduced resources for coping successfully with everyday
frustrations. Such difficulties may be more apparent when your relative is tired or
overwhelmed.
Emotional lability
Emotionalism (or emotional lability) is when someone is unable to control their
emotions. This is due to the direct effects of the brain damage. Individuals may
find that they burst into tears or laughter more easily than previously, which
may be triggered by events that would normally make people laugh or feel sad,
or may come ‘out of the blue’. Whatever the trigger, the individual may feel that
their response is out of control or out of proportion to the situation, which can
cause them embarrassment. It is an effect of brain injury that is not easily
understood by others.
If your relative is having specific difficulty with emotional lability, you and
your relative (and the rest of the family) may need to sit down and agree ways
of handling this. Medication can sometimes help control emotional outbursts.
If emotional lability is a major issue for your relative it may be worth discussing
this with their GP or another doctor involved in their care.
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Anxiety and fear

Feeling worried and scared is perfectly understandable when you consider the
changes that the injured person is experiencing. Anxiety and fear can take many
forms and are relatively common responses to head injury. Your relative may feel
more anxious generally, or they may develop more specific worries. Such specific
worries may be about their health (e.g. having an epileptic seizure), the future
(e.g. returning to work), social situations (e.g. meeting old friends), and changes
in physical abilities (e.g. fear of falling). Your relative may develop a phobia
(extreme anxiety) about particular situations or objects and experience symptoms
of panic, and thus avoid these situations whenever possible. If your relative was
an anxious person before their injury, or had specific worries, these may become
worse. As a result, individuals may become less confident and more dependent on
other family members. They may try to avoid doing certain things for themselves
(asking you or other family members instead) or not want to be alone.
Post-traumatic stress disorder (PTSD)

PTSD is an extreme form of anxiety disorder which can also occur after head
injury. It typically develops after an individual has been involved in or witnesses a
life-threatening traumatic event that is outside normal experience. Symptoms
include emotional numbness, avoidance of reminders of the event, nightmares and
‘flashbacks’ (which occur frequently and uncontrollably), and feeling constantly
‘on edge’ and on the look out for danger. We now know that people can experience
symptoms of PTSD after a head injury even if it is severe and they cannot remem-
ber the details of the traumatic event itself. The precise numbers of people who
develop PTSD after head injury are unavailable; however we do know that this is a
relatively rare reaction. If you have concerns that your relative is showing signs of
PTSD please discuss this with your GP or another health care professional in the
first instance. They can refer you on for expert advice and support.
Emotional numbness
Individuals can also show a ‘blunting’ in their emotional responses. They
may show no emotion and fail to show any response to events or people who
previously would have elicited an emotional reaction (e.g. if their children are
upset or hurt). Again, this can be a direct effect of the head injury (specifically
damage to the front and top of the frontal lobes), or arise from other reasons
(e.g. mood disorders such as depression or PTSD). Although very different
from the emotional disorders described above, this lack of emotion can be as
distressing for others in the family as for the relative themselves.
Behaviour changes
Behaviour changes occurring after head injury usually cause high levels of
distress for families. Family members may feel that their injured relative is ‘not
the same person that they were before’. In addition, the underlying cause of
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the behaviour is normally invisible to others, and so families often do not get a
sympathetic response when their relative behaves oddly. Behaviour changes may
cause distress for the individual with the head injury if they are aware of them.
More frequently however, individuals are unaware that their behaviour has
changed, or is upsetting or offensive to others. We have already discussed one
aspect of behaviour change—increased irritability and angry outbursts. Other
typical behaviour changes include becoming:
◆ impulsive
◆ disinhibited
◆ egocentric (self-centred)
◆ passive and withdrawn.
Impulsive behaviour
The direct effects of injuries to the frontal lobes may result in impulsive behaviour.
If your relative is impulsive, they will react quickly to situations without think-
ing through the issues and options, and may place him/herself in potentially
risky situations as a result (e.g. moving quickly out of a wheelchair without
putting the brakes on, making an impulsive decision, speaking impulsively).
Disinhibition
Individuals may become disinhibited in their behaviour (again, this is directly
related to frontal lobe injuries). Disinhibition means that the individual says or
does things that other people would not do in the same situation and that they
would not have done before their injury. They may become very outspoken,
losing their social graces, swearing, or saying what they think about someone
(even if this is upsetting, rude, or crude). It is as though the social ‘brakes’ we all
normally use to stop ourselves saying or doing upsetting things no longer work
well and behaviour goes ‘unchecked’. They may also be self-neglectful (e.g. not
being bothered with their appearance).
Egocentric behaviour
Individuals may become extremely focused on themselves and their own needs,
and show little or no awareness of others’ feelings. They may behave in ways
that seem very selfish or childish to others. Usually this is a direct effect of dam-
age to the frontal lobes and subsequent difficulties in thinking flexibly and being
able to consider others’ perspectives. This can be very upsetting to other family
members, especially children, particularly if previously the individual was very
caring and considerate to others.
Passivity and withdrawal

Some individuals become quite withdrawn and passive after a head injury, show
no emotional responses, lose motivation, and find themselves unable to initiate
(or get started on) any actions. Therefore they may not engage in activities they
89
used to enjoy, or show little interest in things or people around them. As a

result, individuals may appear lazy or deliberately awkward when they will not
do anything without considerable nagging. It is important to remember that
this is not the case. Although such problems usually reflect underlying frontal
lobe damage, they may also be a symptom of depression. Input from a profes-
sional such as a doctor or clinical neuropsychologist may help tease these differ-
ent factors out and establish the underlying cause of these difficulties.
If your relative is showing aggressive or inappropriate behaviour, remember

that this aspect of head injury is often the most difficult one for families to
deal with. If your relative behaves in inappropriate ways, it is important for
everyone to recognize that what they are seeing are the effects of head injury.
Try not to take this behaviour personally or respond in an emotional man-
ner (the latter can actually make the behaviour worse!). Instead, try to
respond calmly and neutrally, and give clear feedback that the behaviour is
inappropriate or makes you feel uncomfortable.
The impact of emotional problems on cognition

In the previous sections we have talked about cognition and emotions as quite
separate entities. However, this is not the case, and it is important to consider how
thinking and memory processes can also be affected by our emotions. If individu-
als are anxious about their memory or other areas of thinking, or are low in mood,
they are likely to have greater difficulty in remembering, concentrating, and so
on. From your own experience, you might be aware that when you are stressed
or feeling low, you are more likely to be forgetful and unable to concentrate on
tasks. This is a common response. For individuals who have cognitive problems,
worrying is likely to exaggerate the existing cognitive problems. This may make
them worry more or feel worse, and a vicious circle can quickly develop.
Other factors that may also impact on both cognition and mood include pain,
tiredness, medication, and sleep problems. Speech difficulties (which may also
occur after a head injury) can further complicate this picture. If someone is
unable to talk about how they are feeling, emotional distress can be intensified.
Coping with emotional and behaviour changes

We know that the emotional and behavioural changes outlined above are usu-
ally the most distressing aspects of head injury for relatives to deal with. As we
have already stated, it is often much easier to cope with physical changes
(and to an extent, cognitive changes) if you feel that your loved one is still the
same person as he/she was before their injury. As the head injury itself may be
invisible to others (if your relative has made a good physical recovery), such
changes are hard for other people to understand and thus support you with.
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This means that families may not get a sympathetic response from others when
their relative is behaving strangely or becomes very distressed. Sometimes
people who did not know the person well before the injury occurred may over-
look such changes. They may just view them as ‘odd’ or ‘irritable’, and as a result
they may avoid contact with them. Therefore there is a danger that individuals,
and their families, will become isolated. Children in particular may be very
affected and embarrassed by these problems.
Ways to help your relative with emotional and behavioural

problems
Collecting detailed and personalized information (e.g. about the times your
relative shows difficult behaviours or expresses emotional distress) can help
identify situations that trigger these feelings or behaviours.
Resources and self-help guides which provide specific advice on emotional
and behavioural problems after head injury are also available (see Appendix 1).
In addition, ideas from resources which advise on managing other areas of diffi-
culty (e.g. problems in speaking or with memory) can help reduce everyday
stresses and levels of emotional distress (for both your relative and yourself).
Often small changes in the environment (such as reducing background noise or
avoiding having too many visitors) and supporting your relative with their other
problems can help reduce feelings of frustration and irritability. It may be possi-
ble to address some of these other areas of difficulty (e.g. with memory) fairly
easily and in practical ways.
If your relative is low in their mood, anxious, or showing other signs of emo-
tional distress, remind them that their feelings (although frightening or
upsetting at times) are perfectly natural. Listen to their worries and provide
support, but look out for things that you do which might contribute to
additional problems in the longer term.
It is important to seek professional input if the behaviour becomes too much for
you or other family members to deal with. Talking therapies, such as counselling
for your relative, or behavioural approaches (looking at different ways of man-
aging difficult behaviour) can be helpful. Medication may also be used in some
cases. You can talk to your relative’s doctor about these options.
If you are very worried about your relative’s

emotional state
◆ Talk to your relative, offer to support them on a GP visit. Seek immedi-
ate professional support if you fear that your relative is experiencing
high levels of emotional distress, such as depression or severe anxiety, or
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if they talk of suicide or harming themselves in any way and they do not
feel able to seek help themselves. Their GP can advise on medication to
help with this and also on other treatments available.
◆ Psychological approaches (talking therapies such as counselling, or
more structured approaches like cognitive-behavioural therapy and
behavioural therapy) can help your relative think about things differ-
ently, develop new coping strategies and skills, and influence behaviour.
Usually a combination of antidepressant medication and psychological
therapy is most effective. You can find out more about these by talking
to the GP or other health professionals involved in your relative’s care.
If your relative wishes to access psychological support, their GP can
refer them on to an NHS counsellor or clinical psychologist. Alternatively,
you could access this privately. Ideally, you are looking for a therapist
who specializes in head injury. You can ask the GP about this or you can
contact one of the organizations listed in Appendix 1.

As the people closest to the injured individual, family members are most likely
to see and feel the effects of behaviour and emotional problems. Sometimes the
injured person can behave more appropriately or show less distress when in
other environments (e.g. with professionals within a rehabilitation unit). It is
important not to take this too personally. This often happens because you are
closest to your relative and thus the safest person to lash out at.
It is important to recognize that dealing with these types of difficult behaviours
or emotional problems are extremely emotionally draining and there may be
times when you feel unable to deal with them. See if you can recognize the
times when you are less able to cope and feel as if you are running out of
patience. Are there any early warning signs that things are getting too much for
you? If possible have a break and take some time away.
Pay attention to how you are thinking about the problems you are seeing.
Comparing your relative’s behaviour before and after the head injury will tend
to focus you on the negative changes, which will increase your distress. Instead,
try to pay attention to positive aspects of your relative’s behaviour and work
towards not expecting it to be the same as it was before the injury.
If at any time you, or others in the family, feel unsafe, get away from the situation
(e.g. leave the room if you feel the situation is getting out of control). Get sup-
port from others if you feel that you cannot cope with what is happening. You
can approach your GP or contact one of the organizations listed in Appendix 1.
Specialist professionals, such as a clinical psychologist, can provide advice on
managing difficult behaviours.
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In addition, access support for yourself and other family members as needed
(whether this is informal support from friends and family or more professional
support) if you feel that you are not coping well or feel very low or anxious
yourself. Make sure that you take time to look after yourself—to rest and look
after your own health needs. You might want to think about seeking counselling
yourself. This may give you the time and opportunity to express your feelings
about what has happened (e.g. grief, sadness at the changes in your relative).
Do not underestimate the impact of your relative’s behavioural and emotional
changes on you and others.

◆ Why does my relative seem more irritable and aggressive when
they’re at home with the family? Friends and rehab staff always
seem to see them at their best
The people closest to us are often the ones we feel safest ‘hitting out’ at.
Therefore family members are most likely to see and feel the effects of
behaviour and emotional problems after a head injury. It is important
not to take this too personally.
◆ Can I expect my relative’s behaviour and/or mood to improve
over time?
Improvements over time are expected in the majority of cases. Sometimes
the injured individual’s control over emotions and behaviour increases
as they recover. You might see improvements over time as those factors
contributing to these problems (such as poor memory and concentration)
also improve. Unfortunately, in some cases (particularly with more
severe head injuries) the changes may be more enduring. However, there
are many ways of managing these and reducing their impact on everyday
life. Specialist input can help in some cases.
◆ What should I do if I’m very worried about my relative’s mood?
If your relative appears very depressed or distressed, it is important to get
specialist help as soon as possible. If possible, try to talk to your relative
about this; offer to support them at a GP visit. If this is not possible, you
should talk to their doctor in the first instance for advice.
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8
Changes in sexual
functioning
06 Key points
◆ Changes in sexual functioning after head injury are common.
◆ Sexual activity is complex, involving physical, psychological, emotional,
and social factors, and head injury may adversely affect all these.
◆ The impact of head injury on a relationship can be great and diverse,
and the changes are experienced by the injured person and their
partner.
◆ Help including specialist counselling, medication, and aids is available
for sexual problems.
◆ Unresolved issues in the pre-existing relationship will tend to surface
after head injury and may need to be talked about and managed.
Changes in sexual functioning: an overview

Sexual activity is complex. It involves physical, psychological, emotional, and
social factors and head injury can affect it at each of these levels.
Sexual problems are common in the general population with one in 10 men
reporting erectile problems. In a recent UK national survey, 15 per cent of
women reported at least one ‘persistent’ sexual problem. In both sexes prob-
lems become more common with increasing age.
Sexual problems are also very common after a head injury, with approximately
50 per cent of people reporting some difficulty.
Common sexual problems after head injury

Men
Common sexual problems for men are listed in Table 8.1.There are medical
treatments and sexual aids which may help. These aids can be purchased privately
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Table 8.1 Common sexual problems for men after head injury
Problem Treatment
Erectile dysfunction
Difficulty attaining or maintaining an Oral medicines such as Viagra, Tadalis, and
erection sufficient for intercourse. This Cialis, which, taken prior to sexual activity,
can be caused by a variety of factors, such increase the likelihood of a good erection
as disruption of the control by the brain, forming during sexual stimulation by dilating
depression, or accompanying injuries to blood vessels in the penis, allowing blood
other parts of the body (e.g. the pelvis) to flow in to create the erection. Similar
vasodilator drugs can be administered via
the urethra or by injection into the side
of the penis. There are also vacuum pump
and constriction devices, which may be the
treatment of choice for some
Ejaculation problems
Difficulty in ejaculating can occur if there If the problem with ejaculation is due to
is not a firm enough erection for adequate inadequate stimulation of the penis because
stimulation of the penis, so that treatment it is not firm enough, treatment of the
of any erectile problem may resolve the erectile problem will resolve the ejaculation
ejaculatory problem. Sometimes this problem. If the ejaculatory delay is a separate
problem is separate from the erectile problem the use of a vibrator may help
dysfunction
(see useful websites in Appendix 1). However, their use is often more successful
when accompanied by advice and encouragement from a doctor or psychosex-
ual therapist. The therapist would be able to assist the couple to talk about how
these treatments can be incorporated into their sexual time together.
Women
Common sexual problems for women are listed in Table 8.2. As for men, there
are treatments and helpful aids for women which can be prescribed or pur-
chased. Again, discussion with a psychosexual therapist can be enabling and
will provide a space to communicate any anxieties that the woman or her
partner may have.
Men and women

Both men and women can experience other sexual difficulties.
◆ Relationship problems The impact of head injury on a relationship can be
great and diverse. The changes in power and control that come with one
partner becoming less mobile, unable to return to work or to care for the
family, and dependent on their partner, perhaps even to help feed them or
assist with personal care, are obvious. The injured person might wish to
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Chapter 8 · Changes in sexual functioning
Table 8.2 Common sexual problems for women after head injury
Problem Treatment
Difficulties with arousal
and orgasm
This may be caused by sensory A vibrator can be very helpful in increasing genital
loss in the genital area, or feelings stimulation and hence arousal
of shame if injuries have left any
deformities
Painful intercourse
This may be associated with lack If there is infection this must be treated by a doctor.
of vaginal lubrication. If the woman Menopausal symptoms can often be managed with
is not becoming aroused because local oestrogen creams or hormone replacement
she does not feel sexual stimulation, therapy, as advised by a doctor. If there is vaginal
she will not lubricate well. Fear of dryness, lubricants applied before intercourse can
pain can cause spasm of the lower make penetration much easier. Graded vaginal dilators
vaginal muscles, preventing easy used regularly and in sequence can help to relax
penetration the vaginal muscles and assist the woman to regain
confidence until intercourse becomes comfortable
again. It can be particularly useful to have the advice
and encouragement of a psychosexual therapist when
using dilators
resume sex quickly as it helps them to feel more powerful and able to do
something for their partner again. However, you may find the switch from
carer to lover more difficult and you may need more time to adjust. The
partner who used to take the initiative sexually and was very active during
foreplay and intercourse may have to accept a more passive role. Similarly,
the partner who was used to taking a more passive role may have to become
more active. These are major challenges and couples can feel deskilled at first
and avoidance may seem easier than talking about it.
◆ Loss of desire This may be related to depression, anxiety, fatigue, low moti-
vation, and hormonal changes (all of which can be experienced after head
injury).
◆ Difficulties in engaging in foreplay or getting into a comfortable
position for intercourse can also occur because of post-injury physical
problems such as weakness or paralysis of limbs. Dealing with weakness or
paralysis of limbs will require some creative thinking regarding comfortable
positions for sexual activity and the use of pillows or other furniture.
◆ Concerns over engaging in intercourse with a catheter in place
prevents many couples from trying. It is not impossible to have sexual
intercourse with a catheter in place. Talking over anxieties with a doctor,
97
nurse practitioner, or therapist may help to alleviate anxiety and help you to
consider ways of managing.
◆ Masturbation In private this is a perfectly normal form of sexual behaviour.
However, this can be very difficult for a man or woman who has weakness or
paralysis of hands or arms. There is not always an easy solution to this, but
the problem should not be ignored because it may be difficult to resolve.
◆ Inappropriate behaviour Because of the head injury, a person may unwit-
tingly behave inappropriately; perhaps by talking too much and not listening,
by moving too close to another making them feeling uncomfortable, or occa-
sionally by speaking in a rude way, exposing sexual body areas, or touching
another person’s body inappropriately.
◆ Worry about forming new relationships Single head-injured people
often worry about how they will meet partners in the future. This can be com-
plicated if the person is living in residential care or with their parents, who
might, understandably, find it difficult to balance caring for their child with
allowing them privacy and opportunities to meet other young people who
might become future partners. If the person with head injury had poor social
skills prior to the injury, socializing afterwards can seem even more hazardous.
Causes of sexual problems after head injury

Sexual activity is complex and can be affected by many factors. Some of the
post-injury physical factors (such as limb weakness) were mentioned in the pre-
vious section; however, psychological, emotional, and practical issues also have
an important role in the development of sexual problems. Sexual problems after
head injury rarely have a single cause.
Psychological factors
It is often the psychological or emotional changes that occur following head
injury which interfere most profoundly with a person’s ability to relate sexually.
In particular, grief and loss, which are very much part of the normal recovery
process for people with a head injury and their partners, can lead to poor self-
esteem or even depression in both partners which will have a knock-on affect in
the physical relationship.
Cognitive factors
Cognitive impairments such as loss of ability to initiate activities or to empa-
thize with a partner can create major challenges for the injured person wanting
to seek a partner or for the couple wanting to re-establish their sexual
relationship.
Speech problems
Speech problems can also play a role in the development of sexual problems.
Talking about personal issues is difficult enough, but trying to explain sexual
98
desires, needs, or fears when there is a problem with understanding or express-

ing speech makes it even more difficult.
Pre-head injury factors

The relationship existing prior to the head injury also has a great impact on the
development of the relationship after the injury.
◆ Couples with a good relationship prior to the injury, who had no major
unresolved issues, who could communicate reasonably well, and who both
wanted to be in the relationship will find that the trauma and consequent
changes, although challenging, will probably not cause irreparable damage
to the relationship. This couple may need to do some talking and readjusting,
but will be able to do this with (or without) a little professional help. Sexually
they may have anxieties and questions, but with information and encourage-
ment they will move forward creatively together.
◆ In couples with a troubled relationship prior to the injury, who had many
unresolved issues and found it very difficult to communicate or argued a lot
when they tried, or where one or both partners may have been considering
separation, the injury can bring all this sharply into focus. Often it is the
partner of the injured person who is struggling with these issues before the
injured person, who is initially very occupied with the recovery process. As
this partner considers the future and his/her increased involvement with the
injured partner, the pre-existing history of the relationship and buried issues
and resentments surface and have to be dealt with. This is often a lonely time
for the partner, who may not have access to all the help and encouragement
that the injured partner is having. However, this can also be a frightening
time for the injured partner, who may similarly be questioning the future of
the relationship, but who also may be fearful that the alternatives to returning
home may be equally challenging.
What can be done to help with sexual problems?

The cause of sexual problems is frequently multifactorial, and so psychological
and relationship factors as well as the physical factors must be addressed for
resolution to occur. Often, the biggest hurdle to finding ways of dealing with
sexual difficulties is fear of talking about them with a partner or professional
helper. If you can do this fairly early on, you are more likely to identify what the
more important issues are and access the right kind of help.
Seek specialist counselling and advice

Referral to a specialist counsellor such as a relationship and psychosexual
therapist is often very helpful. They can assist a couple to talk about their con-
cerns, their relationship, and their sexual difficulties and help them understand
what factors are contributing to their problems, enable them to express their
fears, grief, and other feelings, and assist them to make decisions that are right
99
for them and find creative ways forward. Accepting and adjusting to these
changes involves some grieving in both partners. The changes in personality
of the injured person and the roles of the couple can completely ‘reshape’ the
relationship, generally and in the bedroom. If both partners have previously
been independent and active people, giving each other a lot of emotional space,
the increased dependency of one partner and the amount of time spent together
after the brain injury can produce a strain on the couple and their relationship.
Partners may equally experience a whole range of feelings including fear, anxiety,
pity, shame, anger, helplessness, hopelessness, loneliness, and depression. This
sort of input might be especially helpful for problems such as loss of desire
which are usually caused by factors other than physical ones.
In addition, a speech and language therapist (SALT) may well be involved from
the start of any rehabilitation programme assisting the head-injured person and
his/her partner to communicate. A clinical psychologist may also be involved
from early on in assessing cognitive ability and behaviour. He/she should be
able to provide guidance with managing cognitive problems, mood changes, or
any inappropriate behaviour.
Single people may also find time spent discussing their situation with a rela-
tionship and psychosexual therapist useful. A therapist may be accessed through
Relate or the British Association for Sexual and Relationship Therapy (BASRT)
(see websites in Appendix 1). Organizations such as Outsiders and Headway
can help persons with head injury, who lack social skills and confidence, to
practise socializing and make new friends.
Asking about medical treatments and useful aids

Any pre-existing medical conditions such as high blood pressure or diabetes
must be monitored and managed by a medical professional. As medicines
themselves may interfere with sexual functioning, it is important to review
medication with your doctor.
Work with your partner and others to problem solve

difficult situations
As we have stated throughout this book, it might also help to consider ways in
which your environment can be adapted. Sometimes, where sex takes place is
an issue, particularly if the injured partner cannot go upstairs to a double bed,
or if she/he requires a special mattress and has a single bed. Often difficulties
with dressing and undressing produce new challenges for a couple. Being able
to talk together about these things creates opportunities for solutions to be
found. Again, a psychosexual therapist can help the couple to talk more easily.
100

◆ Is the sexual problem my relative has permanent and is there
treatment for it?
If the sexual problems have been caused by your relative’s head injury,
there may be recovery of function along with the recovery of other phys-
ical functions. If the problem is permanent, there are physical treat-
ments and medicines for some sexual problems and your GP or your
relative’s neurological rehabilitation doctor may be able to advise you. If
the problem arises mainly because of psychological or relationship
issues following the injury, a psychosexual therapist could help you both
work on these issues. If the sexual problem is permanent, the therapist
can assist you and your partner to be creative and adapt to these
changes.
◆ With the disabilities that my relative has, how will they meet a
partner in the future?
Even without the disabilities associated with head injury, meeting a
partner can be a challenge. It depends on so many factors including
personality, opportunity, experience of mixing with people, and past
experiences of relationships. When you also have physical and/or cogni-
tive disabilities, the challenge is even greater. Finding opportunities to
meet other people, develop confidence, and practice social skills can be
enhanced by organizations such as Headway and Outsiders. Talking to a
relationship and psychosexual therapist can help your relative think
about his/her experiences of and concerns about mixing with people
and making relationships.
◆ Where can I find information about sexual problems and the
right professionals to help?
Useful resources are listed in Appendix 1. You can also talk about this to
your GP or your relative’s neurorehabilitation doctor. They may give
you information/links to useful organizations.
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9
Family issues after
head injury
06 Key points
◆ Head injury can have a significant emotional impact on the whole fam-
ily, not just the injured person.
◆ A wide range of emotional reactions can be experienced by relatives—
there is no ‘typical’ response and no right or wrong way to feel.
◆ Families have a wide range of information and support needs at all
stages of the recovery process.
◆ Useful family coping strategies include:
◆ becoming knowledgeable about head injury
◆ learning how to support the injured relative
◆ seeking support from others in the same situation and sharing
experiences.
So far we have focused on the wide-ranging effects of head injury on the injured
person. However, head injury is a crisis which affects not just the injured person,
but all members of the family. It is now well recognized that its impact can be as
devastating, if not more so, for the relatives as it is for the patient him/herself.
Focusing on family issues is important because:
◆ head injury can cause family members themselves to experience significant
distress, often to the extent that they warrant treatment and help in their
own right
◆ families play a major role in helping people recover from head injury yet the
distress they experience can interfere with this.
Therefore, in this chapter we turn our attention to helping you:
◆ understand the possible impact of your relative’s head injury on you and
your family
◆ develop ways to cope.
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As we have stated throughout the book, not all families have the same needs
or face the same problems; also, not all the strategies listed here work for
everyone.
We have structured the information around the key tasks and challenges
facing families throughout the head injury ‘journey’ (as outlined in
Chapter 2). We have been careful to avoid trying to categorize these challenges
into specific time phases after the injury as it is our experience that many of
these issues arise in an unpredictable way, occurring time after time for some
families, or not at all for others.
The key tasks and challenges facing families after

head injury
◆ Understanding and making sense of head injury and hospital systems.
◆ Dealing with their own fears, worries, and emotional reactions to the
injury.
◆ Coping with the changed relative.
◆ Adjusting to family role and relationship changes.
◆ Managing the common post-injury practical problems.
◆ Supporting other family members and friends in dealing with the crisis.
Making sense of head injury and hospital systems

Research has shown that families have extensive information needs after a rel-
ative’s head injury, and when these are not addressed they can feel less able to
cope. Family information needs tend to focus on:
◆ needing to understand more about the nature of the relative’s brain injury,
how it occurred, its effects, its prognosis, and options for treatment
◆ being clear about the pathway of care that the relative might follow and
knowing how to navigate around the hospital system
◆ needing to have clear ongoing information at times of key transitions (e.g.
information about discharge and further treatment options).
Therefore a useful starting point in the very early stages following the accident
is to seek as much information as possible about your relative’s condition (this
is also discussed in Chapter 1). Useful sources of information include Headway,
the hospital’s Head Injury Nurse (if there is one) and your relative’s care man-
ager (if one has been appointed–this is usually a hospital social worker). Your
local Headway group may also have access to a Family Support Worker. There
are also many excellent websites that provide general introductory facts about
head injury (see Appendix 1).
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Chapter 9 · Family issues after head injury
The need for information continues throughout the recovery process. Chapter 3
takes you through various pathways of care that head-injured people may follow
which take some of the confusion out of the ‘maze’ of services. For those who
have enjoyed a good recovery, longer-term information needs will most likely
focus on issues such as returning to work, driving, and resuming leisure activi-
ties (these are discussed in Chapter 11).
Understanding and managing your emotional

reactions
‘It’s a juggling act. . . a rollercoaster of emotions. One day you’re down,

the next you’re back up again; you constantly have to balance positive feel-
ings against your fears and as my relative is changing all the time so are my
emotions. . .’
No two head injuries are ever the same; similarly no two families are the same.
Therefore it follows that your experience of head injury will be different from
that of other families. To complicate matters further, the reactions among your
own relatives are also likely to vary, perhaps depending on how close they are to
the injured person or the type of relationship they have with them. However,
there are reactions and emotions that are shared by all.
Extensive research has focused on how families react emotionally to head injury
in a close relative. This concludes the following.
◆ Family members experience a wide array of emotions and reactions after
head injury as they try to cope with the challenges associated with it—all of
these are normal.
◆ Typically, there is an episodic quality to these reactions, with families finding
themselves re-experiencing similar emotions at different points in time. For
example, a family might expeience great shock when their relative is first
injured, but as they stabilize this changes to a sense of hope. However, when
the patient later experiences a setback the family are plunged back into the
shock and anxiety that they had felt in the very early stages of the crisis. The
reoccurrence of earlier emotions can be unexpected and can lead families to
feel as if they are not moving forward emotionally.
◆ These emotional reactions can be significant for many people and they may
require professional help.
◆ The emotional strain of having a head-injured relative can worsen, rather
than lessen, with time. This is particularly the case when families are dealing
with a relative’s severe behavioural and cognitive problems.
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◆ It is not all bad. Not everyone experiences significant problems after a relative’s
head injury, and for many it brings a new and more positive focus to the
family.
0Q Myth Some researchers have suggested that the process of adjusting to

a relative’s head injury follows a series of predictable distinct stages,
each expected at particular time points following the injury. It is sug-
gested that relatives can expect initially to feel emotions such as shock,
then pass through other reactions such as anger, and finally, with the
passing of time, reach acceptance of the injury.
01 Fact Many families will share similar emotional reactions. However, it
is too simplistic to see the process of adjusting to head injury as follow-
ing a simple predictable pattern. Some families will not experience all
possible reactions and some will experience certain emotional reactions
at times much later or earlier than other families. It is also possible for
families to pass through some stages, or experience emotional reactions
such as anger, more than once. We have learned that the process of
coming to terms with a relative’s injuries is a dynamic ever-changing
one that shifts not just with time, but also in response to what is hap-
pening in the lives of the injured person and their families.
A wide range of reactions is possible after a relative’s head injury—there is no

right or wrong, good or bad way to react. It is important to let your feelings
come naturally and not to feel troubled if your way of responding is not the
same as the reactions of others in the family.
Emotional shock
Most people are emotionally shocked at the news that their relative has been
injured. Shock can affect people in different ways: some people show their
emotions outwardly (e.g. crying or shouting) while others appear to remain
calm and in control. Some people can seem unaffected by the news they have
just been given. However, for them, and others, things may feel unreal. When in
shock, it is hard to take in or remember information that is given, and you can
find yourself asking the same questions over and over. It can help to ask for
written information from staff if this is the case.
Emotional numbness
Emotional numbness is a common early reaction to trauma (and can also be
seen following bereavement).You feel as if you have lost your ability to feel emo-
tions and you may feel ‘numb’ or ‘frozen’ emotionally. Many people describe
feeling unable to act or do anything (like a ‘rabbit caught in the headlights’).
This can be a disturbing sensation as it may make you feel distant from others,
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who may be expressing their feelings more openly. However, other people find
that being on this emotional ‘auto-pilot’ can help them to cope.
Guilt
As the news of the relative’s injury sinks in, families are commonly affected by
feelings of guilt, when they can believe irrationally that there was something they
could have done to have prevented it from happening. Children in families are
very vulnerable to feeling as if they could have caused the injury (i.e. through
being naughty or causing stress). Guilt can result in family members feeling
that they have to ‘make up’ for what has happened and protect the relative from
further harm. This can lead to conflict or can limit the injured person’s confi-
dence and increase their dependence on others.
What helps to manage guilt?
◆ Acknowledge that feelings of guilt are common.
◆ Do not play the ‘What if?’ game (e.g. ‘What if I had been driving instead of
him. . .’) as this is only likely to increase your distress.
◆ Do not torture yourself over things that were said (or not said) to the injured
person before the accident. People often regret and can become preoccupied
with thoughts that they did not say ‘goodbye’ properly the last time they saw
the person, that they did not tell them that they love them, or that an argu-
ment had not been resolved. This is just part of everyday life and no one can
prepare for such situations. Counselling might help to explore strong and
disabling feelings of guilt that continue long term.
◆ Work closely with therapists involved with your relative to help you step back
and allow the injured person to take some risks safely. It is often easier to ‘let
go’ when we are supported to do so.
Denial
In the early stages it is not unusual for families to find it hard to accept or
believe the information they have been given about their loved one (e.g. that
their relative might die). This reaction is sometimes referred to as denial and is
common when people are given bad news (it is experienced to an extent by
almost everyone). There is an assumption that denial is not a helpful reaction,
but this is too simplistic. What seems to be important is the stage at which
denial is used. In the acute stages of a crisis, denial can help keep people ‘going’,
not ‘fall apart’ and therefore it is seen as useful. However, denial in the later
stages of the recovery process, particularly in the longer term, has been shown
to be problematic for most families and injured people, particularly as it can be
accompanied by unrealistic expectations. When these expectations are not met
there can be strong feelings of disappointment, failure, and hopelessness.
Denial may also result in families failing to acknowledge the reasons for changes
in the injured person (e.g. it may be difficult to understand and accept that
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aggressive behaviours are occurring because of the direct results of permanent

damage to the brain). Importantly, denial can interfere with families being able
to seek the appropriate types of help and can contribute to prolonged or delayed
emotional stress.
What can help with denial?
◆ Work closely with your relative’s therapists to receive regular, honest, and
realistic feedback on their progress. This will help you acknowledge and
understand their strengths and weaknesses and to start to appraise your situ-
ation in light of this.
◆ Take one day at a time—allow difficult information to ‘sink in’ gradually.
◆ Share your feelings and experiences with others at family or carers support
groups.
Anxiety
Families can experience high levels of fear and anxiety after head injury, espe-
cially in the early stages if they are unsure whether their relative will survive.
This time of waiting can cause great strain, with many families feeling extreme
distress as they try to cope with the uncertainty. Sudden and unpredictable
bouts of crying are common at this time, as are loss of appetite, sleeplessness,
and a sense of agitation and feeling as if you need to do something. These feel-
ings tend to lessen as more information is gained about the relative’s prospects
or as they start to show signs of early recovery. However, for some people anxi-
ety can continue to be problematic in the long term and can be very disabling.
Helpful strategies
◆ Allow yourself a time each day to focus on your worries; try to write them
down or talk them over with someone. Next, make plans to deal with the
issues that can be tackled quickly. Following this, try to keep busy and
focused on other activities, to distract yourself, and to avoid being over-
whelmed by problems that you have not yet tackled.
◆ Try to work on preventing a build-up of stress as it can have a negative effect
on your physical and emotional health. Make time each day for relaxation.
There are many ways in which to do this including simply sitting quietly, lis-
tening to music, attending a yoga class, or taking part in physical activity
such as swimming or walking (you may need to arrange for someone to be
with your relative while you are busy).
◆ Learning to relax can be difficult, especially when you are under stress, and
so it might help to attend a relaxation class. Ask at your GP practice or the
library for details of what is available in your area. You could also borrow
DVDs, CDs, and books from your local library that teach relaxation skills.
◆ Try to remember that you will support your relative more effectively if you
take time to care for yourself and manage your stress.
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Anger and frustration

Anger is common after head injury. It can be a very powerful emotion and is
often justified but it can interfere with being able to think clearly and rationally.
Anger may be directed towards the following:
◆ Others involved in the accident or who might have caused the injury, and
this anger may be accompanied by a strong desire to seek revenge. Teenagers
in families can be particularly vulnerable to such thoughts (see Chapter 10).
◆ The injured person—this may take you by surprise and be hard to admit.
◆ Medical staff, especially if families feel that their relative is not receiving the
right kind of treatment or when families are not provided with adequate
information, which can exacerbate feelings of helplessness and confusion.
Families are often frustrated by how often they are given the response ‘We
don’t know’ in answer to their questions (especially about prognosis and
longer-term outcome). While it can be very difficult to feel as if no one is
giving you clear answers, it might help to know that ‘We don’t know’ is often
the most appropriate answer to early questions.
◆ Some people do not know where to direct their emotions and simply feel
angry with the world or with a ‘higher power’, such as God. Previously held
religious (and other) beliefs can be challenged and the world can feel as it is
an unsafe and insecure place.
Anger can be experienced at all stages in the recovery process. It can re-emerge
or be re-triggered at times of heightened emotional distress (such as during
court proceedings about the accident).
What can help?
◆ Anger typically occurs when communication breaks down and people feel
that they are not being listened to. Seek information, and ensure that you
have enough support and that you feel you are being heard.
◆ Try not to suppress angry thoughts or push them aside (which can increase
stress); instead try to accept them as a ‘normal’ part of coming to terms with
what has happened. Promise yourself that you will not act on these feelings
until the ‘crisis’ has passed and you have had time to think things through.
Emotional relief
Relief is also a common reaction, often in the early stages. Being told that your
relative is stable and unlikely to die is usually accompanied by overwhelming
relief and a sense of gratefulness. Often families let their guard down a little at
this point and may experience a surge of emotions that have previously been
held in check; this is normal but may be unexpected and overwhelming.
Emotional relief can trigger high (possibly unrealistic) hope and expectations of
full recovery.
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Depression
Persistent feelings of sadness, despair, and hopelessness (that do not pass) are
among the most common longer-term problems reported by family members.
Depression is often accompanied by loss of enjoyment of things, lack of energy,
poor sleep, and increased tearfulness. There can also be feelings of being over-
whelmed by the situation and feeling unable to cope. It is more than feeling
‘down’ or ‘a bit low’. Depression tends to develop in tandem with the gradual
realization that the relative is unlikely to recover, which can be particularly diffi-
cult after the initial period of hope and optimism that may have been felt in the
early stages of recovery. Research suggests that many family members rely on
medication (such as antidepressants, tranquillizers, and sleep medications) to
help them cope with depression after a relative’s head injury. Symptoms of
depression include:
◆ problems sleeping
◆ poor self-care
◆ extreme guilt
◆ feeling completely alone
◆ excessive use of alcohol or drugs
◆ feeling hopeless about the future
◆ possible thoughts of suicide or self-harming.
What can help?
◆ Take symptoms of depression seriously and seek help. See your GP immedi-
ately and be guided by him/her. He/she may suggest a trial of medication
and/or counselling.
◆ Set realistic achievable goals for yourself and your relative.
◆ Try to pay attention to how you are thinking about (appraising) your rela-
tive’s injury and what it means for you. It is easy to feel overwhelmed when
thinking about the enormity and uncertainty of the changes you are facing—
some people liken it to facing an enormous wall that has to be knocked over
in ‘one go’. Instead, it may be helpful to try to see the head injury as trigger-
ing many smaller changes that you have to get used to and adjust to. This
way you will be knocking the wall down brick by brick, making the task seem
a little easier.
◆ Go easy on yourself—try to be mindful of when you use terms such as
‘should’ and ‘must’ (e.g. ‘I must telephone all our relatives today to let them
know how John is progressing’) as these can make you feel under pressure.
Instead try to tell yourself: ‘It would be nice if I could let the family know
how John is doing. I will phone as many people as I am able to. The others
will understand if I don’t get around to them today.’
◆ Seek the company and support of family and close friends.
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Grief
The emotional reactions associated with head injury have been likened to the
feelings experienced by families following bereavement. While some of the
responses felt after head injury may be similar to those felt after a relative’s
death (such as loss, despair, sadness), there are some quite distinct differences.
Head injury tends to result in an incomplete grief reaction as the person, who has
been changed (but not killed) by the head injury, is only partially lost—they
look the same but are different. As many post-injury changes are permanent,
few families will experience the final closure to this grief that death can bring.
What can help?
◆ Allow yourself to grieve.
◆ Discuss and share these feelings with other family members.
◆ Seek counselling.
◆ Attend a family support group.
◆ Set realistic limits for your relative—acknowledge that they have changed
and may not be able to achieve what they could have before. This helps to
reduce disappointment and further feelings of sadness and loss. Concentrating
on your relative’s strengths will help you to take a more positive focus.
Acceptance
It is often assumed that the process of family emotional adjustment results in a
final stage of acceptance. However, although this is the case for many families,
it does not necessarily imply a positive acceptance. For some people, accept-
ance is synonymous with ‘giving up’ or ‘giving in’ to the head injury, and with
losing their sense of hope and fight. Acceptance may be accompanied by a re-
emergence of both sadness and anger as families are required to find a new way
of living. Acceptance of the injury and its effects is less problematic for other
families, and they are able to move on positively. As such, the notion of accept-
ance can hold both positive and negative meanings for families.
Positive personal growth

Despite the difficulties discussed here, there is evidence that families can, over
time, report positive outcomes from traumatic experiences such as head injury.
Positive effects include increased family closeness, enhanced ability to cope
with stress, recognition of their personal strength, appreciation of life, and spir-
itual development.
What can help manage troublesome emotional reactions?

Many of the early reactions described above dissipate as more clarity and under-
standing about the injured person’s condition and prospects are gained. Support
from others can also be helpful. The two main types we recommend are coun-
selling and family support groups.
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Counselling
Many family members feel the need to seek more formal emotional support,
such as counselling. Counselling involves the opportunity to meet regularly
with a professional who is trained to listen to and support people who may be in
crisis and need help to get through a difficult life event. It is usually time limited
(e.g. perhaps for six weekly sessions) and offers you the chance to explore issues
that may be concerning or distressing you.
Counselling provides families with a safe and confidential opportunity to dis-
cuss feelings of personal responsibility for their relative’s illness (especially com-
mon in the early stages), loss of control, guilt or fear about the future, and
distressing thoughts (such as wishing that the injured person had died) so that
they can move on from these reactions, reduce the distress associated with
them, and be able to start functioning effectively in everyday life. Counselling
can also be helpful when needing to work through difficult decisions following
the injury (such as deciding to separate from the injured person). It can also
provide the opportunity to develop techniques for changing how you think
about and manage the situations facing you.
Options for counselling will vary according to where you live but may be sought
via the following:
◆ Your GP surgery: some GPs have access to counsellors within the practice.
They are not likely to be specialists in head injury but will still be able to sup-
port you through the experience. Alternatively, your GP may be able to access
specialist counsellors if you have a neurorehabilitation facility in your area.
◆ Your local branch of Headway may also have access to (or could fund) coun-
sellors (who are likely to have more experience of working with the relatives
of head-injured people). Headway family support workers can also offer a
‘listening ear’ but may not have formal counselling training.
◆ If your relative is in a rehabilitation facility, there may be various forms of
family emotional support available there, including counsellors and clinical
psychologists. Speak to your relative’s primary nurse in the first instance.
◆ Counselling can also be accessed privately (see www.babcp.org for details of
counsellors).
Some families find it useful to seek help from their own, or the hospital, chap-
lain/spiritual advisor. For those who prefer to seek more ‘anonymous’ forms of
help, the Samaritans (tel: 08457 909090) may be an option.
Family support groups
Many families find support groups helpful after head injury. They can provide:
◆ an opportunity to discuss head-injury-related problems and the chance to
learn from the experience of others
◆ emotional support and a safe place to vent difficult feelings
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◆ relief from stress

◆ strategies for different ways of coping
◆ information
◆ a way to reduce isolation and provide an opportunity to expand social
networks.
Local branches of Headway often provide support groups, and many people
consider them a ‘lifeline’.
If you do not wish to attend physically a support group, you could take part in
newsgroups on the Internet dedicated to brain injury (try typing ‘brain injury
newsgroup’ into Internet search engines such as Yahoo and Google). This will
give you online support and chat with other people affected by head injury at a
time that is convenient to you (and with anonymity if you require it).
Coping with changes in your relative

A major source of stress (often referred to as a ‘burden’) for relatives in the later
stages of recovery are the ongoing changes in emotional control, personality, or
behaviour in the injured person (discussed in Chapter 7).
What can help?
◆ Acknowledge and try to accept that almost all head-injured people ‘change’
to some extent after their accident.
◆ Share the experience with others who have first-hand experience of this
problem. Carers support groups might be helpful or you might consider
seeking counselling with a specialist head injury counsellor.
◆ Work closely with your relative’s therapists to learn practical ways of coping
with and managing changes. Try to focus your efforts on what can be changed
and adjusting to what cannot be changed.
◆ It is helpful to remember that your relative is likely to change further as
recovery continues. Some family members, having adjusted to the initial
change brought about by the head injury, can have trouble ‘letting go’ and
learning to be less protective towards their relative as they begin to show
signs of improvement. This can lead to family stress and tension (especially
around issues of risk-taking, such as the injured person wishing to resume
driving again but the family worrying about safety), and professional support
and advice may be needed to resolve this. Similarly, families have often put
their own lives ‘on hold’ while their relative is recovering and tell us that they
no longer feel needed or useful, which is also distressing.
◆ Families whose relatives remain very impaired after treatment (e.g. continue to
experience severe problems with cognition, control of emotion or behaviour)
are typically in greatest need of support (especially if the injured person
returns home). This can be the time when ‘reality’ sinks in and the challenges
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of living with a head-injured person become clearer. In such instances fami-

lies may need specialist advice and practical support, such as seeking day
care or respite for their relative. Research has shown that one of the most
helpful things for families is social support, and so it is important to enlist
the help of family and friends, where possible. Your local Carers Centre
is also a useful source of practical advice and emotional support (see www.
carers.org.uk).
Adjusting to family role and relationship changes

People with head injury typically experience a loss of their previous roles within
the family. This may mean that they no longer have the same responsibilities or
undertake the same duties within the family (and everyday life) as they did
before the injury; for example, someone who went out to work full time and was
the main ‘breadwinner’ may now not be able to work. This can have an impact
on other members of the family who might need to take on these roles instead.
There might also be changes in the quality and intensity of family relationships
and alterations in the ways in which family members interact with and relate
to each other. This might include changes in the way you communicate,
problem-solve, and deal with issues. These changes may be very hard to manage.
When these role and relationship changes endure, are very marked, or are inad-
equately managed, relationship problems can occur (in many cases resulting in
separation and/or divorce, the rates of which are much higher in people with
head injury than in the general population).
However, relationship difficulties are not inevitable. Post-injury changes can be
positive for some families, with the injury resulting in them spending more time
together, and achieving a better understanding and appreciation of each other
(head injury is often said to put life ‘into perspective’ for families).
What can help?
Learning to adjust to changes within the family is rarely easy.
◆ Accept that role changes are almost inevitable after head injury.
◆ Try not to make irreversible decisions based on early role changes too soon in
the recovery process (e.g. selling the family business because it is thought that
the injured person will never resume their work role). Only make these deci-
sions when you have as much information as possible, have talked them through
with key people involved, and you feel that your own stress is well managed.
◆ Keeping a diary/journal can be helpful. It can provide an outlet for express-
ing worries and concerns, and it can be looked at later to help you see how
things have changed (it is easy to lose perspective).
◆ Develop a plan with the injured person (aided by a health care professional)
to help them gradually to resume some of their previous roles (even if just
in part).
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◆ Family sessions with trained professionals can be used to address changes

in relationships or ways of communicating in the family that are very
troublesome. Work with families can include formal family therapy (a struc-
tured psychological intervention undertaken by specially trained therapists
and usually offered to target specific significant family difficulties). However,
most families do not require family therapy, but may benefit from family ses-
sions (with head injury professionals) during which issues of concern can be
addressed. Such sessions are typically offered by clinical neuropsychologists
but may also be with social workers, counsellors, or doctors. Ask your GP,
Headway, or your local head injury team about what is available.
Managing practical problems

Many practical problems can arise following head injury, such as financial con-
cerns (e.g. you may have less money coming into the household if your injured
relative is no longer able to work), accessibility issues (e.g. needing to consider
moving from your home if it cannot be adapted to suit your relative’s physical
problems), or transport problems, all of which can contribute to family stress.
Families may also have to cope with loss of support from the extended family
and friends over time, and as a result may become socially and emotionally iso-
lated, and feel stigmatized and lonely (which in turn can worsen their distress).
Having fewer people to turn to for help can seem to exacerbate many practical
problems.
What can help?
◆ Seek advice from your local carers centre or branch of Headway on
practical support that might be available to you. Dialability (a national char-
ity offering advice on equipment and aids) can also be a useful source of
advice.
◆ Feeling unable to socialize often arises from other difficult emotions such as
anger and hopelessness. It can be helpful to talk these through (with friends,
family, or a counsellor) and try to find ways round them.
◆ Attend a family/relatives support group (see above).
◆ Increase social competence by going out and facing people, even when it
feels difficult to do so—to avoid social withdrawal. Plan outings with people
who can support you.
◆ Seek support from outside the family.
◆ Try to maintain (or re-activate) your previous contacts, friendships, and
activities as far as possible. Tell them as much as you and your relative are
comfortable with about the injury and its consequences so that they can
understand your situation.
◆ Think carefully about whether you should give up your own work and only
do so if it is really necessary.
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Supporting other family members and friends

It is helpful to seek and accept the support of those that you are close to.
However, it is important to remember that head injury can also have an emo-
tional effect on both close and extended family, and also on friends and work
colleagues. Those outside the immediate family may find it difficult to access
information about the injured person’s status and progress, and, like the aver-
age person, they are unlikely to know much about head injury. As a result, they
may feel very worried and confused about what is going on and may choose to
contact you for information. Managing requests for updates, progress reports,
and information from others can be a significant source of stress for the injured
person’s immediate family (especially in the very early days post-injury), as is
managing the distress of others.
What can help?
◆ Nominate a reliable family member as the key family communication person,
whom friends and relatives should be directed to contact for information
instead of you. Alternatively, this ‘newslink’ person could send regular
updates to family and friends by e-mail or text.
◆ Draw up a timetable for family and friends to visit your relative. This will
ensure that your relative always has enough visitors (but not too many, to
avoid ‘overload’) and may enable you to leave them for short periods.
◆ Set clear ground rules for visits. These should be based on what you and the
injured person need and want. For example, some families agree that they
will not cry in front of the injured person or that only positive issues can be
discussed at the bedside. There are no right and wrong answers to this issue,
but whatever is agreed should be communicated clearly to all involved and
adhered to consistently.
A source of stress for many families during the post-acute stage is managing
advice from family and friends. During the acute (early) phase there is a greater
tendency for families to listen to the advice of the professionals (because of the
immediacy of medical problems). However, as time passes family members
often start to develop their own ideas about the injured person’s problems and
may begin to offer you advice (much of which is likely to be conflicting).
What can help?
◆ It is advisable to listen carefully to all advice given, but not to act on it until
you have given it careful thought.
◆ Try to be assertive and tell others when you do not want to receive advice or
help. It can be difficult to do this without them feeling criticized or offended,
but can be easier for them to accept if you are able to tell them what would
help you instead.
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◆ Ultimately it is important to deal with issues in the way that you and your
injured relative are happy with; try not to be too concerned with what others
think.
Close friends (especially of the injured person) can play an important role in
their recovery but they will also need help coming to terms with what has
happened.
What can help?
◆ Try to be patient with friends, especially when they do not seem to under-
stand your relative’s problems. It can help to remember that, as you spend
much more time with your relative, their difficulties are likely to be more
familiar to you.
◆ Take time to explain the injury and its effects to close friends so that they
understand what your relative needs. Encourage them to pass on this infor-
mation to other friends.
◆ Give friends a distinct role if possible. They are usually keen to help but may
not know what is needed (e.g. could they drive the injured person to their
weekly speech therapy appointment?)
◆ Encourage them, as far as possible, to maintain the interests that they previ-
ously shared with the injured person (e.g. continue playing golf together).
This will help your relative maintain some continuity with the past, provide
them with a ‘normal’ social outlet, and may give other family members some
much needed time without them.
Special issues for different family members

Most family members experience similar concerns and issues after a relative’s
head injury but, depending on their relationship with the injured person, there
may be particular issues that perhaps no one in the family shares with them.
Understanding spouses’ issues

The spouses and partners of people with head injury have probably received
most of the research attention when families have been the subject of studies.
The special issues for them include the following:
◆ Dealing with the ‘loss’ of their life partner (and shared life plans), their
sexual partner, and, if there are children in the family, their co-parent. It may
be difficult for other family members to appreciate fully the extent of the
losses felt.
◆ Coping with taking on new roles and responsibilities within the family. This
might include having to become the main earner (especially stressful for
spouses who did not work previously) or having to assume unfamiliar roles
(e.g. a mother may have to assume the injured father’s previous role of
taking the children to football practice). Spouses may also become the
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injured person’s main carer, which can have a significant impact on their
relationship. In particular, taking on carer duties is often accompanied by
loss of the sexual relationship, especially when a spouse feels that they now
have a parental rather than marital relationship with their partner. Care-
taking commitments can also result in spouses sacrificing their own needs
(e.g. giving up their career or social life) in favour of those of the injured
partner. This can lead to a reduced quality of life for spouses.
◆ Spouses may feel trapped inside the marriage following the injury. They may
want to separate from the partner but feel unable to because of a sense of
duty, guilt, and fear of being negatively judged by other family members and
professionals. Unfortunately, the rate of relationship breakdown after a head
injury is high (significantly higher than in the general population)—counselling
may be useful in such situations.
◆ When there are dependent children in the family, spouses may also feel addi-
tional strain in supporting their injured partner in their ongoing parental role.
They may have concerns about their partner’s ability to carry out this role
(perhaps because of cognitive problems) but be unsure how to address or
access support (the issues around parenting after head injury are still not ade-
quately addressed by most head injury services). Spouses may find themselves
drawn into a clash of loyalties, wishing to support their partner’s parental role
and authority within the family, yet at the same time wishing to safeguard their
children’s well-being. When risk issues emerge (e.g. in relation to children’s
safety), people are often afraid to seek help from outside agencies for fear of
stigma and serious consequences for their partner and children.
Parents of injured adult children

Parents whose adult children are head injured also face some potentially
unique challenges, especially if their child has a partner or spouse. Clashes can
occur between the two parties on how the injured person should be managed
and cared for, and in some cases this can lead to tension and breakdown in
relationships. Some parents wish to care for their injured ‘child’ themselves, but
this might undermine the injured person’s spouse, who may be struggling to
accept this role, or who might wish for their partner to be cared for elsewhere.
However, some parents may not wish to resume such a role as it may interfere
with their plans (e.g. to retire abroad) and may resent any expectations that
professionals may have for them to do so.
It can help if all involved parties meet with one of the injured person’s therapists
to talk through how these types of situations can be managed.
Close friends of the injured person

Head injury can affect all the people that are connected to the injured person,
including friends. Friends are likely to experience the wide range of emotional
reactions described earlier, such as shock, fear, and anger, but are less likely to
118
be offered support from services and so may struggle to understand and man-
age their reactions.
Friends can also experience some degree of role change in relation to the injured
person, which they will have to adapt to. They may have to take on a more
supervisory role, help the person practically more than they used to (e.g. make
meals for them), or become involved in aspects of their care (e.g. assisting with
toilet use when out on a day trip). While friends might welcome the opportunity
to help and willingly take on these new roles, the nature of their relationship
with the injured person will undoubtedly change as result. In many cases rela-
tionships and emotional bonds are strengthened, but others can become
strained and friendships are lost.
Children with head injured relatives

Children with head injured relatives have wide-ranging needs, especially when
the injured relative is their parent. This is discussed in Chapter 10.
02 Questions frequently asked by relatives

◆ Will I feel better over time?
Because of the unique nature of head injury we cannot predict how you
and your family will feel in the future. While we know that many families
find positive aspects to their lives many years after head injury, for some
families there is a trend for their emotional problems to worsen over
time, and this is particularly the case when the injured relative has ongo-
ing behavioural and emotional problems. Therefore, if this is one of your
relative’s primary issues, it is important to seek help now—for them and
for support for you and your family in coping with them.
◆ Why do other families that we have met seem to be reacting so
differently from us to their relative’s head injury?
How a family responds to and deals with a relative’s head injury depends
on many different factors.
◆ How each family functions (both before and after the injury—all
families have their particular ways of dealing with problems and ris-
ing to challenges).
◆ The quality and closeness of famly relationships (some families are
emotionally closer than others).
◆ The effects of the head injury itself (you will remember reading ear-
lier that families often find it harder to cope with marked changes in
their relative’s behaviour).
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◆ The type and amount of help the family receives (from professionals
and from family and friends—the more support the better!).
◆ Other family problems: it is important to remember that the prob-
lems families might be experiencing can arise because of the general
stress of having a relative who is ill, or the strain associated with some
of the challenging problems your relative might be experiencing. For
other families, issues may reflect a worsening or triggering of prob-
lems that existed before the accident.
Given this wide range of possibilities it becomes easier to see why no
two families’ experience of head injury will ever be very similar.
◆ Should we hide our feelings from our injured relative as we are
afraid it will make them worse?
There is no right or wrong answer to this question and you, as a family,
should do what you think will work best for you all. Are you a family who
have always openly shown and shared your emotions? If so, your relative
is likely to notice any changes to this and might become suspicious or
afraid of why people are acting differently towards them. They may be
anxious that you are all hiding something dreadful. It is generally always
better to try to be open and honest with each other and to share your
feelings and concerns. However, some head-injured people find coping
with emotions (especially those of others) difficult and so may either
become overwhelmed by your distress or be unable to respond to it and
seem indifferent. Seek the advice of a clinical neuropsychologist about
useful ways of sharing concerns with your relative. Ensure that you have
a support network among family and friends so that you do not need to
rely solely on the injured person for support at this time.
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10
Helping children
cope with head injury
in the family
06 Key points
◆ Children, like adults, are affected emotionally when a close relative,
especially a parent, is head injured.
◆ They need honest age-appropriate information to help them under-
stand head injury, and an opportunity to express feelings and concerns.
Sometimes counselling may be necessary.
◆ Children (of all ages) can feel that they are to blame for the injury and
need to be reassured about this.
◆ There is a link between the ways that children and adults cope with
stressful events. It helps if adults can model positive coping strategies
for the younger members of the family.
◆ Head injury services do not routinely offer support to children, so adults
need to be proactive about asking for help.
In this chapter we turn our attention to the issues faced by children who have a
close relative, particularly a parent, with head injury. We discuss the ways in
which children can be affected by family head injury and provide guidance for
adults on how to explain head injury and support children.
We have written this as a separate chapter for the following reasons.
◆ Children have their own special needs at times of stress and cannot be
regarded as ‘mini-adults’.
◆ Head injury services do not routinely offer help to children (because of lack
of resources, lack of expertise, and lack of awareness of the issues facing
them). However, without advice, it can be difficult for families to know how
best to help children through this emotional experience. It is hoped that this
chapter will address this gap and increase your confidence in supporting
children and asking for help for them at this difficult time.
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The information contained here is directed, in the main, towards helping

children who have a head-injured parent. However, much of it is applicable to
children with other relatives with head injury, such as a grandparent or a sib-
ling. We provide guidance on children’s information and support needs at the
different stages of their relative’s recovery, and as children’s needs also vary with
age, we have tried to draw out the key issues for children at various ages. This
might be helpful to families where there are children with different age ranges.
How are children affected by head injury in the

family?
The challenges and tasks faced by children when a parent (or other close
relative) is injured are, in the main, very similar to those experienced by the
adults in the family (e.g. having to cope with the changed relative, managing
role and relationship changes). However, the implications of these challenges for
children, and how they are experienced and understood by them, are different
from the implications for adults.
◆ Because of their age and lack of life experience, children may find it much
harder than adults to comprehend or make sense of the changes observed in
the parent. In particular, children (often secretly) worry that they might have
caused their parent’s injury in some way.
◆ Witnessing such changes (especially cognitive and behavioural changes) can
affect how children go on to develop emotionally. Infants and toddlers,
especially, can be confused, unsettled, and afraid of the altered parent; this
can affect the bond or attachment they had with that parent and can make
them feel insecure. As a result, they may become very unsettled, and not rec-
ognize or know how to relate to the ‘new’ parent.
◆ Role changes within the family can also impact on children. Even very young
children may be required to assume additional household duties to try to
support the uninjured parent who may be caring for their spouse. Older chil-
dren may be given extra responsibility, perhaps being asked to look after
younger children in the family. They may be asked to ‘keep an eye’ on the
injured person and this can gradually reverse roles, where children become
almost parent-like towards the adult. This has been shown to have detrimen-
tal effects for both children and adults, even though most children will will-
ingly take on the role of ‘young carer’. Very young children might have their
place as ‘the baby’ in the family taken from them by a very needy injured
parent, leaving them feeling neglected or ignored.
◆ Children may be ‘stigmatized’ for having a parent who is ‘different’ and may
be teased or bullied at school. Teachers may be unaware of the potential
impact of head injury on families, and may be oblivious to the issues facing
children or how to help them. Again, children may not openly discuss these
problems for fear of causing additional family stress. Instead, they may try to
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Chapter 10 · Helping children cope with head injury in the family
resolve these issues alone, or ‘act them out’ in the form of problematic behav-
iour or poor school performance.
◆ Children, like adults, also suffer the effects of the problems that can arise fol-
lowing head injury, such as financial difficulties, relationship breakdown,
and house moves. However, unlike adults, they are often less emotionally
equipped to cope with such issues and may worry only about how they will
be personally affected. Older children may alter their own life plans in
response to the changed family circumstances; for example, teenagers do not
apply to universities far from home (as previously planned) as they feel that
they must stay close to the family. However, this is often accompanied by
feelings of resentment.
◆ Children’s ability to cope with the changed family life is also limited by the
lack of information and support available to them (therefore we have pro-
vided some brief information that you might want to read with your children
in Appendices 2 and 3).
◆ Children can also be affected further by the reduced physical and emotional
availability of the non-injured parent, who is likely to be preoccupied with
their partner’s needs, or who may be too distressed themselves to be able to
acknowledge their children’s needs.
The small amount of research that has been carried out tells us that, when faced
with these challenges, children can experience many of the problems that adults
face, including anxiety, worry, depression, fear, and embarrassment. In addi-
tion, children of different ages tend to react in different ways (which might, if
you have children of different ages in your family, explain why they could each
be exhibiting different types of problems).
◆ Babies and infants (who are often mistakenly thought not to be affected by
events going on around them because they cannot yet comprehend them)
tend to show problems such as unsettled behaviour, disturbed sleep, and
feeding difficulties at times of family stress.
◆ Pre-schoolers can become clingy (because they feel insecure), may have
more temper tantrums, and may lose some of their previously acquired
skills (e.g. begin bed-wetting again). They may also develop new fears (e.g. of
the dark).
◆ School-age children (pre-teens) worry about being different from their
friends and are vulnerable to being teased about their parent being ‘odd’.
They may become sad and withdrawn and fall behind in their school work.
They can also show an increase in fears and phobias (in particular, they can
fear others in the family coming to harm).
◆ Teenagers may respond with resentment and anger. They might also
become tired (as a result of having to take on additional household tasks)
and their schoolwork could suffer. They may show an increase in mood
swings and oppositional behaviour (this is often characteristic of ‘normal’
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teenage years anyway) and stay out of the house and resist family rules and
boundaries. Teenagers can also become preoccupied with issues of justice
and may wish to seek revenge on any third party involved in the parent’s
injuries (they may need support from outside the family in dealing with these
strong emotions).
Some children, irrespective of their age, may not show outward signs of being
affected and this can lead adults to assume that there are no problems. In some
situations, children can even show improvement in their behaviour when faced
with stressful situations; this may be the equivalent to an adult’s attempts to
‘keep busy’ as a way of distracting themselves from their worries. These children
may need support just as much as children who show their distress openly.
Despite the child problems described here, it is important to note that most
children are resilient when faced with crisis and are spared the more nega-
tive effects of this experience.
Ways of helping children

Giving children information and explaining head injury
Like adults, children need information to help them make sense of head injury
and the issues and changes they have experienced as a result of it. It is particu-
larly important to provide children with information because in its absence
(especially if they are very young) they have a tendency to create their own
explanation of events, which can often be inaccurate and more distressing than
the ‘truth’. Despite this, children do not typically receive adequate information
when a relative is injured. Why not?
◆ Adults (understandably) worry that children might be upset by discussion of
their relative’s injury and so (misguidedly) try to protect them from this.
However, in our experience children do want information and report feeling
less upset when they know what is happening.
◆ Head injury staff may feel that they do not have the expertise to discuss
issues in a way that children will understand, and so they too avoid talking to
them. They might also feel anxious about dealing with children’s distress, or
lack the confidence to advise parents on supporting children. To add to this
there are few published sources of information about head injury written
specifically for children.
As a result of this adults can find themselves struggling to know how best to
help children cope.
How do you explain head injury to children?

It helps to start by knowing what children of different ages typically understand
and misunderstand about head injury. Children’s understanding of illness and
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injury (in general) tends to increase as they get older, with teenagers and young
adults having quite a sophisticated view of illness, while younger children see it
in much simpler terms. The same is thought of their understanding of head
injury. As a result, it is helpful to provide information at a level that is suitable
for your child to understand. Key issues for you to bear in mind are discussed
below.
◆ Babies and infants (up to the age of 2 years) The concept of a head
injury is largely incomprehensible but they are aware of simple concepts such
as being ‘hurt’ and ‘sick’, so these terms can be used when telling them what
has happened to the relative. From around the age of 6 months babies become
more aware of (and distressed by) the absence of a parent (especially if it is
the mother and the separation is prolonged). Even very young children are
sensitive to the ‘emotional atmosphere’ in the family and will pick up on and
sense distress in others.
◆ Pre-schoolers (up to the age of 5 years) As language and thinking
become more developed pre-schoolers have a greater understanding of what
an injury is. However, they are likely to struggle to understand some aspects
of head injury, such as the more ‘unseen’ problems (e.g. poor concentration)
and may not understand that the injured person has ongoing difficulties if
they look well. They will also find the idea of problems being long term or
permanent difficult to understand, and so they are likely to expect the rela-
tive to make a full recovery.
A very important issue to bear in mind with this age group is that they typi-
cally view everything in relation to themselves (called ‘egocentric’ thinking)
and so are extremely vulnerable to blaming themselves for the accident. Very
young children have told us that they believe their parent’s accident hap-
pened because they (the child) had been ‘naughty’ that day. Children may
not tell you about these beliefs without some encouragement, because they
feel guilty and distressed. Therefore we have found that it is very important
to reassure all, but especially younger, children that they are not to blame for
the injury (whether or not they feel that they are).
Children of this age can also be afraid that they will ‘catch’ the injury from
their relative and so may avoid them. They will also be likely to ask you to
repeat information many times and frequently ask questions about what you
have told them.
◆ Young school age children (age 6–12 years) Children in this age group
are capable of having a more sophisticated understanding of head injury;
for example, they will understand both its ‘seen’ aspects (such as physical
problems) and its ‘unseen’ aspects (such as cognitive problems) if they are
clearly explained. However, they are still likely to expect the injured person
to make a full recovery, and so may need help in understanding the long-
term nature of head injury. Children of this age can be very concerned about
what their friends will think about their relative (as they do not like feeling
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different) and so will need help knowing what to tell peers. This can be a very
difficult issue for these children and they can be vulnerable to teasing. They,
too, may blame themselves for their relative’s injuries and may try to com-
pensate for this by trying to help them recover—this may be through the
belief that they must not misbehave and so they may become overly helpful
at home. If so, they may need help in knowing how to behave ‘normally’
towards the relative.
◆ Older school age children and teenagers Young people in this age
group can generally comprehend the complexity of head injury (in much the
same ways as adults), and so can be told about issues such as the severity,
seriousness, extent of recovery, and permanence of the injury. However, they
will need considerable emotional support to be able to cope with this
information.
Before giving your children information, try to ascertain what they already
understand about the injury (and what they would like to know). This will help
you know where to begin and how to structure information.
Try to prepare what you are going to say in advance of talking to them. Taking
into account their age and what they already know), follow the structure below:
◆ State what a head injury is (the information provided for children in
Appendices 2 and 3 may be a good starting point).
◆ Say how the head injury specifically affects their relative (include all areas of
difficulty).
◆ Reassure the child that the head injury is not contagious and they are not to
blame for it.
◆ Focus on the injured person’s strengths and abilities, so that a balanced pic-
ture is given.
◆ Discuss recovery and the likelihood of some long-term problems. Balance
this with an optimistic statement about the future and reassure the child that
the relative will still be involved with them. For example, you could tell a
4-year-old that ‘Daddy cannot walk at the moment because his legs are not
working after the accident. He is learning to use his wheelchair and when he
gets really good at driving it he will be able to take you on his lap to the park
in it.’
◆ Acknowledge that the child may be feeling sadness and fear, that this is normal,
and that it will improve.
◆ Ask the child to repeat what you have said (so you can check for any
misunderstandings).
◆ Ask the child if they have questions.
It is important to be prepared for some direct and difficult questions that could
distress you (e.g. ‘Will he ever walk again?’). It is usually best to give an honest
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answer where possible, although this can be upsetting for all involved. Very
young children benefit from lots of physical contact (e.g. sitting on your lap)
when being given ‘bad’ news. It is also important to see information giving as an
ongoing process so that your children are constantly ‘up to date’ with what is
going on.
Most important of all is to remind yourself that there is not one ‘correct’
thing to tell children or a ‘right’ way to say it. A willingness to talk to them
and to listen to their concerns is much more important than what is actu-
ally said.
What else can help children?

As well as being provided with information about head injury, there are a
number of other ways that children can be supported.
Practical strategies
◆ Try to keep children’s daily routines as ‘normal’ as possible (which can be
very difficult in the early stages of the head injury). It helps if they can con-
tinue with after-school activities, clubs, and hobbies, but you may need to
have extra help to maintain this.
◆ It is helpful not to have too many different people looking after your children
(especially if they are babies or very young) as this can make them feel
insecure.
◆ It is also preferable for them to be cared for in their own home (if possible)
rather than going off to relatives.
◆ Tell the school what is happening—they may be able to offer some extra sup-
port and will be sympathetic if the children seem upset or show changes in
their behaviour.
◆ Get advice on any extra help or benefits you could access (e.g. extra nursery
sessions—your health visitor can often organize this to help you out).
Emotional support
◆ Most children cope well with regular information about what is happening
to their relative combined with the chance to talk through their feelings with
an adult they know and trust. They can often have many conflicting feelings
towards the injured parent which they should be encouraged to discuss (e.g.
they feel sorry for them but also resent all the changes that have occurred since
the injury). They may also be afraid that they will have to undertake care tasks
for the relative (e.g. take them to the toilet) and should be reassured that this
will not be expected of them. Younger children might prefer to draw or ‘play
out’ how they are feeling (using dolls, toy hospitals) rather than talk.
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◆ If the relative is away from the family for a prolonged period (e.g. for inpa-
tient rehabilitation), children need help to cope with this separation.
Encourage regular visits to the relative (if practical) alongside telephone
calls, e-mails, and letters. If visits are not possible it is helpful for the children
to see photographs of the relative as they are, especially if they have changed
significantly as a result of the injury. Children can be given a ‘symbol’ of the
relative to have close, e.g. parent’s sweater to cuddle or their perfume.
◆ If children are able to visit the rehabilitation unit, ask if they can observe and
participate in their relative’s therapy sessions. This provides an opportunity
for children to spend time with their relative and to learn about head injury
and its treatment. However, it is important to plan visits involving children
carefully, and to avoid visiting when children are tired, which the injured
person might find hard to tolerate.
◆ Encourage physical contact between the relative and children, although there
may be some anxiety about this if the injured person has severe physical
limitations.
◆ Children may need to relearn ways of communicating with relatives who
have speech and language problems.
◆ Some children may need specialist support (e.g. if they are continually sad,
their school work deteriorates significantly, or they are engage in risky behav-
iours such as drug/alcohol use). You should seek advice from your GP in the
first instance or your relative’s head injury team (if appropriate). Headway
may also be able to offer family support. Children who had problems (with
behaviour, learning, or family relationships) before the injury are at greater
risk for having increased problems afterwards and so may need a ‘closer eye’
keeping on them.
◆ Children are best supported by adults who are managing their own stress.
Therefore it is important to look after yourself in order to be able to look
after others.
When do children need support?

Children need support and information throughout the whole of their relative’s
recovery, but there are key times when they might experience heightened levels
of stress and may benefit from additional help.
Acute stages
Children may need:
◆ help to deal with the emotional shock of the accident
◆ honest answers about whether their relative might die
◆ information about ITU/medical equipment and machinery in advance of
seeing the relative for the first time so that they are prepared.
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Post-acute stage
Children may need:
◆ help in managing ongoing separation from the relative
◆ support in coping with changes in the relative
◆ clear explanations about what will happen to their relative after they leave
hospital and why (e.g. move to rehabilitation)
◆ help in setting realistic expectations for the future
◆ help in coping with setbacks (e.g. if their relative does not make progress)
◆ help in understanding why the relative may not return home (e.g. due to
behavioural problems)
◆ considerable ongoing emotional support in the event of the relative remain-
ing in a reduced awareness state, PVS, or coma.
When the injured person’s rehabilitation is finished/is discharged home
Children may need:
◆ help in preparing for the relative’s return home (especially if they have
changed significantly); it is not uncommon for children to resent the parent
returning home, especially if the separation has been prolonged and new
routines have been established.
◆ support so that they do not to take on the role of a carer.
Longer term
Children may need:
◆ ongoing emotional support to cope with the effects of living with someone
with head injury
◆ help to make normal transitions, such as going to university and leaving
home, which many children who have parents with chronic conditions find
difficult because of guilt and worry that the family may not cope without
their help
◆ help to cope with other stressful life events that can occur because of head
injury (e.g. parents’ divorce, house moves); this ‘pile-up’ of stress can be
challenging for all the family.
Is it all bad for children who have head-injured

relatives?
So far we have focused on the possible negative effects of family head injury on
children; however, this is likely to be only one part of the picture. Research is
beginning to show that coping with difficult situations can bring out the best in
children and can have a positive effect on their overall development. When they
are well supported through stressful experiences, some children say that it made
them more emotionally mature, taught them important coping skills that they
129
might not have otherwise learnt, and helped them see themselves as strong people.
They also said that their relative’s injury provided them with a different per-
spective on what was important in life and that they appreciated their family
more after it.
02 Frequently asked questions:

◆ My children have not asked any questions about the accident so
I haven’t discussed it with them. Wouldn’t it just upset them?
It is usually best to discuss important family issues as openly and honestly
as possible. It is possible that your children do not have any questions,
although this is not common. It may be that they are trying to protect
you by not raising the issue; perhaps they have sensed your distress
about events and do not want to cause further upset. If information is
given sensitively and suited to the child’s age it should not cause stress.
Not knowing the facts can be more distressing.
◆ I have three children. Two of them seem to have coped well with
my wife’s head injury, but one of them is really struggling. Why is
this? Have I done something wrong?
No, this commonly occurs in families and does not mean that you have
done anything wrong in supporting this child. As we said earlier, some
family members will react differently from others to events—and there are
often reasons for this. Ask yourself, was this child particularly close to the
parent and so may have had a stronger reaction to the injury? Is this child
dealing with any other problems at the moment or were they having diffi-
culties before the injury? How old is this child? Did they understand the
information they have been given about what has happened? Are the types
of problems they are having ‘typical’ for their age (e.g. teenagers often
experience emotional turmoil—this might not be related to the injury).
◆ My partner used to do all the childcare, but since his head injury
I’m not sure he is safe to be left with the children. How can
I tackle this?
Someone’s safety to parent after head injury is a very important but
sensitive topic and, surprisingly, not one that is addressed by many
rehabilitation services. You have raised an important issue, so try to
enlist the help of any professionals working with your partner so that
they can advise. Ask your GP or health visitor if there is a special parent-
ing service in your area that you could be referred to (often provided by
children’s mental health services). If you are concerned about the safety
of any child, it is important to seek help and advice from your GP, local
Social Services Department (see the telephone book for your local
office), or the NSPCC.
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11
The longer term
06 Key points
◆ Many families need to make lifelong adjustments to their relationships,
roles, expectations, and values following head injury.
◆ Returning to driving and work are often primary long-term goals but
return rates after head injury are disappointing.
◆ Families generally cope better when they have a positive outlook on the
future, have a strong social support network, seek ongoing information
and support, and are able to accept help.
◆ The long-term picture is not always bleak. Head injury can result in
positive outcomes for families, such as feeling emotionally closer to each
other, having different perspectives on life, and feeling better equipped
to deal with life’s stresses.
As you will have seen throughout this book, it is very difficult to make an accu-
rate prediction of recovery and progress after a head injury. The effects of head
injury on the family can be lifelong, requiring the family to make considerable
adjustments to many aspects of their lives.
Every head injury is unique and each individual and their family will have a dif-
ferent experience, taking different pathways through the head injury journey.
As you have seen from earlier chapters, spontaneous changes to the brain occur
in the months and even first years after injury. This period of recovery continues
for much longer than initially thought, but does slow down over time and usu-
ally leaves some longer-term difficulties.
While a negative outcome is not inevitable, if your relative does have persisting
problems in the areas described (particularly in behaviour and thinking) it can
be very hard to get back to normal family and work life. In many instances it is
not possible to resume life as it was before, or fully resume previous roles and
interests. The individual with the injury and the family are then faced with
adjusting to changes in lifestyle, family roles, ways of being together, financial
circumstances, and a future that may seem uncertain. As outlined earlier, this
process of adjustment takes time and differs for everyone. There are key practi-
cal issues faced by families in the longer-term. Returning to driving and work
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are often primary long-term goals but return rates after head injury are
disappointing. These two issues, together with the financial and legal aspects of
head injury, are discussed below.
Returning to work after head injury

Return to employment is usually a major goal. Apart from the financial security
that working can bring, it also gives us a sense of purpose and identity, enhances
our self-esteem and confidence, and gives our time a sense of structure. Individuals
can often feel a real sense of loss when they suddenly have to stop working.
Returning to work after a head injury can be challenging, even if the initial head
injury was mild and the ongoing effects quite subtle. While most people return
to work after a mild injury, this is less likely after a moderate or severe injury.
Research and clinical evidence suggests that only about a third of people with
more severe injuries return to work following head injury.
What makes return to work difficult?

Resuming work after head injury may be problematic for a number of reasons,
for example:
◆ There may be issues related to the nature and severity of the head injury
itself. Getting back to work can be very difficult if the injured person has
ongoing difficulties such as physical, cognitive, communication, fatigue, or
behavioural problems. They may not be ready for work if these problems are
significant; in particular a return to work is likely to be unsuccessful if your
relative is still trying to manage emotional problems, has difficulties interact-
ing with others, or has reduced insight into their problems.
◆ There may also be factors related to the job itself. Important issues that can
all have a significant impact on the individual’s chances of returning success-
fully are:
◆ the complexity of the job (it is likely to be more difficult to return to a role
such as an air traffic controller or surgeon after head injury than to a post
of sales assistant because of the risks attached to the former)
◆ the availability of the job (Is your relative’s old job being held open?)
◆ the hours required to complete the post (Could your relative manage full-
time work?)
◆ the supportiveness of the employer
◆ the suitability of the work environment (Can it be adapted to take your
relative’s wheelchair? Is there a lot of background noise?)
◆ the travelling distance to the place of work.
Planning return to work

If your relative is thinking of returning to work it is important to ensure that
their chances of doing this successfully are maximized. It can be extremely
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Chapter 11 · The longer term
demoralizing for all involved if this is not properly thought through and goes
wrong.
What can help?
◆ Discuss with your relative (and any therapists involved in their care,
such as occupational therapists and clinical psychologists) their view
of their readiness to return to work Are they aware of their problems and
how these could impact on the work role? Discussion of the results of any
formal assessments that have been undertaken (e.g. neuropsychological
assessments (of memory and concentration) and workplace assessments)
may be helpful. Are they motivated to address these problems before attempt-
ing a gradual resumption of formal work? It is not unusual for some individ-
uals to return to work without any support because they are not anticipating
any problems at all. Difficulties at work may then occur and seem to come
out of the blue. This can be the first time the injured person realizes that
their head injury is causing them problems and it may also be the first time
that they seek help or that it is offered. Therefore it is important that the
injured person, the employer, and those supporting the process begin from a
realistic starting point.
◆ Carefully plan a gradual and slow return to work This will involve
thinking carefully about each of the factors listed above and deciding how
issues will be addressed. A key issue is being clear about what job the injured
person is planning to return to—many people resume working for their old
company but not necessarily in their previous role. It can be difficult for
some injured people to consider taking on a ‘lesser’ duty. A graded approach
to returning to work might involve initially only working for a few hours a
week, which are gradually increased as the person’s levels of stamina and tol-
erance develop. Many head-injured people want to resume work as quickly
as possible and may be unwilling to follow this step-by-step approach, and
they require family support and encouragement to do so. You can also help
your relative by working with them on developing their use of any recom-
mended compensatory aids and strategies, such as diaries and reminder
systems, so that they can use these efficiently and effectively in the
workplace. In addition, your relative might consider having a ‘mentor’
(or trusted colleague) at work who can give honest feedback about how the
return is going. This type of feedback can be invaluable.
◆ Seek as much help and as many resources as possible to support your
relative’s return to work Specialist support may be offered by a range of
professionals such as occupational therapists, clinical psychologists, disabil-
ity employment advisors (based at your local Job Centre (part of the
Jobcentre Plus service)), and charitable organizations such as Rehab UK.
Headway may be able to tell you if a specialist vocational rehabilitation
team exists in your area. The occupational health service at your relative’s
place of work can also be a useful starting point. These professionals may
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offer advice, help identify trial work placements, and offer ongoing work-
place support. Help from rehabilitation teams and vocational rehabilitation
services can make a big difference.
◆ Be realistic about the effect of returning to work on the rest of the
family Contrary to many people’s expectation that normal life will be
resumed once the injured person gets back to work, family life can actually
become more stressful. It is not unusual for families to see an increase in
their relative’s levels of fatigue and irritability at home as they put all their
effort into ‘holding things together’ at work. This should gradually improve
over time, but if not this could be an indicator that the process of returning
to work needs to be more gradual.
What if your relative’s return to work is unsuccessful?

For many people, return to their previous work is not a realistic option and they
may need considerable support with the difficult issue of what to do instead.
There may be a number of alternatives. Could doing voluntary work help them
get back into a work role? If so, it may be helpful to seek advice from an occupa-
tional therapist in setting this up. Could your relative try to seek employment
elsewhere? This opens up the issue of completing application forms and being
interviewed, all of which can be more challenging for people to undertake after
injury or illness. As a result, they may need support to do this.
Some people may never be able to resume work, which can be distressing for
them and their families. In such cases emotional support and counselling may
be necessary. After a period of adjustment they may be willing to consider
developing their leisure time and finding other ways of structuring their time.
This can be especially challenging for those who were still in education or train-
ing or just establishing themselves in their chosen career when they were injured.
However, it is a really important factor in helping the injured person regain
self-esteem.
Leisure activities
Leisure and hobbies are an important part of many people’s lives. In similar
ways to work, occupying our time meaningfully and enjoyably gives us pleasure,
contributes to our self-identity, and can enhance our physical and emotional
health. For many people, taking part in leisure pursuits can be their main means
of being in contact with others. Unfortunately, head injury can significantly
impact on a person’s ability to participate in many leisure activities.
Physical difficulties may be the primary problem for many injured people, espe-
cially for sports and outdoor activities. Some of these problems can be compen-
sated for in some hobbies. For example, a wide range of adaptive devices are
available that can enable people with physical impairments to continue garden-
ing from their wheelchair. Similarly, many wheelchair users participate in sports
such as basketball. Information on adaptive devices and equipment can
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be obtained from your local occupational therapy service or via Dialability

(a national service providing information and advice on specialist equipment
and aids).
Ongoing cognitive problems can be also a major barrier to resuming many hob-
bies, affecting everyday ‘taken for granted’ activities such as doing the cross-
word, completing a jigsaw, or taking part in the local pub quiz. Reduced
concentration, problems with remembering, or difficulties with speech can all
impact on the injured person’s ability to take part in such activities. This can
also have an impact on the rest of the family, especially if these were activities
that were enjoyed together. In many cases things can be done to compensate
(see Chapter 5 for advice on managing problems with thinking skills) such as
taking regular breaks and managing fatigue and background noise. However, in
some instances it might be difficult to compensate for problems (e.g. a pub will
nearly always be noisy and your relative may not be able to cope with this level
of distraction).
Being unable to resume previously enjoyed activities can contribute to low
mood for many people, especially if this is coupled with having to make adjust-
ments in other aspects of their life, such as work or driving. Specialist advice on
ways to return to old activities (and to pursue new ones) can be sought from
some occupational therapy services. Headway and other day services in your
area may also be able to support you and your relative with this. This may need
to be undertaken in conjunction with supportive counselling for your relative if
they need more formal help in coming to terms with the changes.
The loss of the injured person’s leisure interests can be difficult for families to
cope with as well. Aside from having to deal with your relative’s distress, you are
likely to have to adjust to having your relative with you for longer periods of
time. This might seriously impact on your own social and leisure time, espe-
cially if your relative is not safe to be left alone. You may also find yourself hav-
ing to participate in your relative’s hobbies and interests more than previously
(or more than you would like!) because of the level of support that they need to
carry these out. This needs to be carefully negotiated with your relative so that
arguments are prevented and expectations are clear. It might help to seek a
volunteer to support your relative with their leisure interests—this could be
a willing friend. They will need clear and honest information about your relative
(e.g. if there is the chance that they could be incontinent on a trip out, say so, so
that they are prepared for this). You might also want to consider contacting a
local ‘befriending’ scheme (such as the Ryder–Cheshire Association) who can
link your relative with a volunteer who will support them in their leisure activi-
ties. This can also provide families with much needed time alone. Your local
branch of Headway might also provide day services where people with head
injury can meet others and enjoy organized leisure activities and day trips out.
If you are researching leisure activities yourself via the Internet, your local
county council website can also be a good starting point.
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Medical advice should be sought on whether it is safe to resume sports and

hobbies that may be regarded as potentially dangerous, such as contact sports
(e.g. rugby and boxing) or some outdoor pursuits (e.g. rock climbing). Advice
offered to your relative on when and how to return to previous sporting
activities will depend not only on the nature of the head injury and whether
your relative has developed epilepsy, but also on the sport and the level to which
your relative is hoping to return.
Many people will return to sport after head injury, physical restrictions permitting,
without concern. However, if you or a relative has been competing at a profes-
sional level before a head injury there may be specific guidelines or rules to con-
sult before rushing back in at a pre-head injury pace. Examples where guidance
is clear include boxing and rugby. At the professional sports level, additional
checks will need to be made with insurance agencies and others. Whatever the
level and form of sport your relative is planning to return to, it is usually advisa-
ble to return in a graded way to avoid incurring new injuries and to prevent
fatigue.
Travelling and holidays form a significant part of leisure for many people, but
there may be practical concerns and worries about a person’s safety to travel
after head injury. Whether and when your relative is safe to fly after their head
injury will depend on so many factors that it would be misleading to offer advice
other than to discuss this with the doctors who know your relative and with any
travel insurance company or airline you are planning to use. If your relative has
had any surgery, you may wish to make sure that there are no specific time
restrictions associated with the surgical condition. Practical problems when
travelling (e.g. access issues, travelling with a wheelchair) can be tackled with
advance planning and some research into any help that might be available to
you from airlines and other carriers. Take advantage of the opportunity to board
flights ahead of other passengers and accept any assistance offered. Dialability
can offer advice on accessible hotels and holiday accommodation as well as
travel insurance for people with long-term health problems.
Driving
Driving is of great importance to many people in modern life, especially if they
live in rural or isolated areas. Driving often gives us a real sense of independ-
ence and control. Therefore being unable to drive after head injury can lead to
a number of practical problems and be another source of stress.
Although some people will be able to return to driving as soon as they are fully
recovered, for others it is not possible (e.g. if they have had surgery to their
brain or have had one or more epileptic seizures, or if they are at high risk of
having one since the head injury).
Driving is a highly complex skill, which draws on many different functions.
First, there are the physical aspects of driving. In order to drive, an individual
136
needs to be able to manipulate the gear stick, reach the pedals, see adequately,
and so on. Driving also requires a number of complex thinking skills, such as
attention (e.g. being able to stay focused on driving and ignore distractions),
speed of information processing (e.g. being able to respond quickly to someone
stepping into the road unexpectedly), memory (e.g. remembering your route),
being able to make quick decisions, and visual perception (in order to make
sense of the visual information coming in from all around). Over time, after we
learn to drive, driving becomes an automatic skill that we rarely think about—if
you think back to when you were first learning to drive you may remember how
difficult (and tiring!) it was to draw on all these skills when they were not so
automatic.
For everyone’s safety there are very clear rules about driving after a head injury.
It is illegal to drive if you are unfit to do so (and you will not be covered by your
insurance policy if you do drive). Therefore after a head injury your relative has
a legal responsibility to inform the Driving Vehicle License Association (DVLA)
and their insurance company about the injury. If they are unable to do this,
someone else within the family will need to take responsibility for contacting
these organizations. The details of the DVLA are provided in Appendix 1. They
will send a form for your relative or you to complete, and may contact your rela-
tive’s doctor for information. In some cases, they may arrange an independent
assessment.
The information used by the DVLA to advise head-injured people when it is
safe to resume driving is constantly being updated. Your doctor can give you
more information about this. At the time of writing (January 2008), the advice
is as follows.
◆ If there has been full physical, visual, and cognitive recovery after a brain
injury, someone who had a single seizure in the first 24 hours after their
brain injury may be permitted to return to driving within 12 months as long
as they have not had further seizures.
◆ Also, if someone has seizures but they have only occurred at night for over
3 years, the DVLA may advise that it is safe to resume driving.
◆ There are also considerations to be made if, after returning to drive, any
medication for seizures is being changed. If an anticonvulsant is being dis-
continued, the driver is obliged to inform the DVLA. The DVLA usually
requests a letter from the doctor advising on the change in treatment and
often advise that driving is ceased for 6 months. The reason for this is that
there is a risk of seizures recurring when anticonvulsant medication is
stopped, even if there have been no fits for many years.
If your relative has had brain surgery, there will be a minimum 6 months ban
from driving. The DVLA will then decide whether he/she can start driving
again. They usually do this on the basis of information collected from doctors
and other professionals involved in your relative’s care. In some cases, your
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relative may be referred for an independent driving assessment before he/she is

able to drive again. There are many specialist centres around the country that
offer this service. They can also give advice on car adaptations if needed, and
offer driving and refresher lessons.
Remember The information used by the DVLA to advise head-injured

people when it is safe to resume driving is constantly being updated.
Contact the DVLA directly or your doctor for more information. It is also
important to seek advice if you are learning to drive (i.e. you have a provi-
sional license) or are considering learning after a head injury.
Finances
Your family income can be significantly affected after a head injury. This may
only be on a short-term basis (e.g. in the stages of initial recovery after mild
head injury) but is typically a longer-term problem facing most families. This
might be because your relative is not working (at least in the initial stages of
recovery) or is unable to return to work in the long term, or because you and
other family members are unable to work (or can only work in a reduced capacity)
because of your commitments to caring for your relative.
There are a wide range of benefits to which your relative may be entitled.
Whether your relative is entitled to any will depend very much on their individ-
ual circumstances. The Citizen’s Advice Bureau in the UK is one of the best
sources of information and support with all of the above. There are also
some useful leaflets and websites (e.g. the Department of Work and Pensions
website (www.dwp.gov.uk) provides an overview of the benefits system).
The completion of benefits application forms can be complex, especially when
an injured person’s primary problems are not physical (these can usually
be ticked off in boxes much more easily than cognitive problems); therefore it
is advisable to have help from someone experienced in this when you are
completing your applications. Again, Headway (staff or other families) may be
an invaluable source of information and support. Similarly, you should seek
advice on how to appeal if you are refused a benefit that you believe you are
entitled to.
This issue of finances leads us to another important issue—whether your rela-
tive is able to manage and deal with financial and other complex issues after
their injury.
Legal issues
Obtaining legal representation after a head injury
Legal issues surrounding head injury can be very complex. The context in which
a head injury may occur is diverse: road traffic accidents, sporting accidents,
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accidents at work, and medical or clinical negligence to mention just a few.

As stated elsewhere in this book, the head injury may be invisible to others.
Therefore it is important to find a legal representative who is fully aware that
head injury may cause physical, cognitive, and emotional problems.
There are a number of law firms who specialize in the field of head injury. It is
advisable for somebody seeking legal advice following a head injury to find a
legal representative who has experience in handling such cases. Often the best
way of locating the right solicitor is through the advice of healthcare profession-
als who may be knowledgeable of which solicitors regularly handle head injury
claims. Headway can also provide a list of personal injury solicitors who special-
ize in head injury. Of course there are numerous firms advertising personal
injury law and associations for law firms specializing in personal injury on the
Internet. The key is to locate a firm that specializes in head injury cases.
A head injury can significantly change the lives of the person and their family.
Claiming compensation is one way of trying to achieve some stability and sup-
port in order to improve or maintain independence and quality of life.
02 Frequently asked questions about

compensation claims
◆ How much time do I have to make my claim?
The general rule is 3 years from the date of the accident, but there are
exceptions that your legal representative can give advice on.
◆ How much compensation is paid out to somebody with a head
injury?
There is no standard amount of compensation for any particular type of
injury. Each case is assessed individually on its merits.
◆ What is an interim payment?
An interim payment is an amount paid in partial settlement of a claim.
Sometimes somebody with a severe head injury needs private rehabili-
tation costs or their accommodation adapted for them. Such a
payment(s) would be made to facilitate recovery whilst consideration is
given to the award for the full amount of losses.
◆ How much will I have to pay the solicitor?
Most specialist reputable firms recover legal fees from the person
responsible for the individual’s head injury or their insurers. In criminal
cases where somebody has been assaulted and sustained a head injury
the claim is dealt with by the Criminal Injuries Compensation Authority
(CICA).
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The medico-legal assessment process

Central to the legal process is obtaining information as to the effect of the
head injury on the individual concerned. Specialist reports may be obtained
from a number of clinicians including medical consultants, clinical neuro-
psychologists, occupational and other therapists (e.g. speech and language
therapists, physiotherapists), and nursing and care experts. Often the solicitors
for both the claimants and the defendants (or the defendants’ insurers) instruct
their own experts so the person who has the head injury will have to attend a
number of examinations as part of his/her medico-legal claim. This can be a time-
consuming and stressful process.
Individuals who sustain head injury often do not have good insight into the
nature of their problems. This phenomenon is sometimes related to the nature
of the injury to the frontal lobes of the brain and/or that the patient is denying
aspects of his/her condition. The most accurate description of how somebody’s
behaviour has changed following a head injury typically comes from close rela-
tives or friends. Therefore it is common for specialists involved in the medico-
legal process to want to ask questions of family members. Indeed, in addition to
this, solicitors will often take witness statements from family members regard-
ing the changes observed in their clients post-injury.
Stress associated with the medico-legal process

Head injury compensation claims will frequently raise complex issues. In the
aftermath of a critical life event individuals and their families are frequently
coping with the immediate physical, psychological, and emotional consequences
of the head injury. They are not necessarily focused on future planning and any
associated legal issues. Indeed, such considerations may appear somewhat out
of kilter with what has happened as individuals are trying to adjust to a trau-
matic life event. However, accessing practical advice and support in relation to
legal issues can help to clarify questions regarding what has happened and what
can be done to help.
It is important to realize that compensation claims are rarely settled speedily.
The medico-legal process itself can be particularly stressful for the individual
sufferer and his/her family, carers, and friends. Therefore it is advisable, where
at all possible, to be open with professionals, including solicitors, doctors, and
other clinicians about the stresses involved so that advice and support is made
available where possible. Indeed, experienced solicitors will frequently try to
access specialist counselling support for their clients and family members as
part of the claims process.
Legislation to protect individuals who lack capacity to make

specific decisions for themselves
Issues regarding an individual’s ability to make decisions can arise following
head injury for the reasons outlined in this book. The effect of the head injury
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may range from mild problems with attention, concentration, and memory to
the severely injured who remain in a comatose or persistent vegetative condition.
There is new legislation in the UK to protect people who cannot make deci-
sions for themselves, including those who have suffered head injury. The
Mental Capacity Act 2005 came fully into force on 1 October 2007. It pro-
vides clear guidelines for carers and professionals about who can take decisions
in which situations.
The Mental Capacity Act clearly states that everybody over 16 should be treated
as able to make decisions until it is shown otherwise. The Act also aims to enable
people to make their own decisions for as long as they are capable of doing so.
Furthermore, the law recognizes the right of individuals to make unwise decisions.
The Mental Capacity Act states that:
An adult can only be considered unable to make a particular decision if:
1. he or she has an impairment of, or disturbance in, the functioning of the
mind or brain, whether permanent or temporary,
AND
2. he or she is unable to take any of the following steps:
◆ understand the information relevant to the decision
◆ retain that information
◆ use or weigh that information as part of the decision-making process
◆ communicate the decision made (whether by talking, sign language, or
other means.
When assessing somebody’s ability to make a decision, the assessor must follow
the above steps.
When assessing someone’s capacity to make a decision we have to state very
clearly what decision we are referring to. This is because it is possible for some-
one to be able to make decisions competently about one aspect of their life (e.g.
whether to have a medical treatment or not) but not have the capacity to make
a decision about another area of their life (e.g. how to handle their money)
because they have cognitive problems.
When someone lacks capacity regarding a decision
The Act intends to protect people who lose the capacity to make their own deci-
sions. It will:
◆ Allow the person, while they are still able, to appoint someone (for example
a trusted relative or friend) to make decisions on their behalf once they lose
the ability to do so. This will mean that person can make decisions on the
person’s health and personal welfare. In the past the law only covered finan-
cial issues.
141
◆ Ensure that decisions that are made on the person’s behalf are in their best
interests.
◆ The Act provides a checklist of things that decision makers must work
through.
People with no one to act for them will also be able to leave instructions for
their care under the new provisions.
Independent Mental Capacity Advocate
The Mental Capacity Act set up a new service, the Independent Mental
Capacity Advocate (IMCA) service. The service will help vulnerable people
who cannot make some or all important decisions about their lives.
The IMCA service will mean that certain people who lack capacity, including
people with head injury, will be helped to make difficult decisions such as medi-
cal treatment choices or where they would like to live. It is aimed at people who
lack family or friends to speak for them.
The Office of the Public Guardian
The Office of the Public Guardian (OPG) protects people who lack the mental
capacity to make decisions for themselves. It does this through regulating and
supervising court-appointed deputies, and by registering Lasting Powers of
Attorney (LPAs) and Enduring Powers of Attorney (EPAs).
Lasting Powers of Attorney
An attorney is someone who can advise on legal matters and represent you in
court. Lasting Powers of Attorney replace Enduring Powers of Attorney. LPAs
will give vulnerable people greater choice and control over their future and
enable people to choose someone they trust to look after their affairs if
necessary.
LPAs cover personal welfare as well as finance and property decisions. As they
can only be used after they have been registered with the Public Guardian, they
will be under more scrutiny and ensure that any decisions made on behalf of
people lacking capacity are in their best interests.
In some cases, where there are suspicions that an attorney or deputy might not
be acting in the best interests of the person they represent, the OPG will work
with other organizations to investigate any allegations of abuse. There is a new
criminal offence of neglect or ill-treatment of a person who lacks capacity.
The OPG also provides information on mental capacity to the public and can
provide contacts with other organizations working in the field of mental
capacity.
The Court of Protection
The Court of Protection deals with all issues relating to people who lack the
capacity to make specific decisions regarding, for example, financial or serious
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health care matters. It will look at cases where there is disagreement on what
the person’s best interests are. The Court of Protection has specially trained
judges to deal with decisions relating to personal welfare, as well as property
and financial affairs.
What has been outlined above with regard to the Mental Capacity Act fre-
quently raises more questions and potential anxiety. Rather than individuals
and their families becoming anxious and wading through policy documents
about such issues, it makes sense to access professionals and agencies such as
Headway who are more familiar, and resourced, to offer advice and education
on such topics. The Act itself has as its central purpose the protection and best
interests of vulnerable adults. Issues relating to capacity do not always arise fol-
lowing head injury. However, when they do, collaboration between the injured
party, family and carers, clinicians, and legal representatives will better ensure
that the individual’s best interests are indeed met.
Longer-term family adjustment: learning to live with

head injury in the family
Throughout this book we have stressed that head injury typically requires life-
long adjustment for the injured person and their families. In the early stages of
recovery, this process is driven by the desire to ‘get back to normal’. However,
as time passes, families gradually experience a growing realization that the old
way of life has changed permanently for all of them and a new sense of ‘normal’
has to be achieved. What follows is usually an ongoing rearrangement and read-
justment of family routines, duties, roles, expectations, and values. Ultimately
this can lead to a sense of the head injury becoming integrated within family
life. However, it is fair to say that there is typically no ‘endpoint’ to this process
(families rarely say that they have ‘accepted’ the injury, as this notion is often
associated with ‘giving in’) and many years on most people are still ‘learning to
live with it’. As you will have read earlier, for many families this can be a positive
process, in which a range of new strengths and values are discovered and family
relationships and bonds are strengthened.
What helps families cope in the long term?

The following can help to support other family members and family life.
◆ Continue to review family roles and responsibilities Things will gradu-
ally change over time (for better and for worse, and often without you
noticing) and it can help to ‘take stock’ every now and again. Perhaps review
how duties are shared and ask whether any alterations are required in
order to accommodate other (non head injury-related) family changes.
For example, you may have been your relative’s primary carer but now wish
to resume work. To whom and how will your duties be reassigned? Do your
children need a period of time when they are able to help less with the injured
person because they are due to take school examinations? Is everyone in the
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family happy with the allocation of duties, and if not, how can difficulties be
addressed? Regular family meetings can help avoid the build-up of unspoken
stress and concerns.
◆ Try not to view your entire world through the lens of the head injury
Not all the challenges you will face in the coming years (e.g. difficult teenagers,
financial concerns) will be as a direct result of the head injury (although
inevitably some will be). Thinking through the source of any problems will
help you identify the best course of action and the best options for support.
◆ Try, as far as you feel able, to re-establish some of your old family
routines and activities After head injury, there can be a tendency to dis-
continue family traditions (such as the whole family meeting for the annual
summer barbecue) because of a belief that life can never be the same again,
or that it is wrong to have fun when your injured relative is still experiencing
difficulties or is not living with the family. Research has shown that families
that resume a ‘normal’ family life, as far as they are able, as well as maintain-
ing their sense of humour generally fare better in the long term. This is not
always easy and will take time. It is especially important to try to achieve this
if you still have young children living with you.
Research tells us that families’ support networks diminish in the longer
term, especially as services withdraw (usually at a time when they are needed
most). Therefore it is important to try to establish (or re-establish) a strong
social support network, comprising family, friends, and services. Do not be
afraid of asking for more support, even if it is many years since the initial injury
occurred.
In the longer term, many families will be continuing to deal with the persisting
effects of the head injury. It helps to continue to use the strategies that you have
already found helpful and to seek specialist advice and support from services if
you feel that you are no longer coping with previously well-managed problems.
This is particularly relevant for families whose relative continues to show behav-
ioural problems, as we know from research that this problem causes families the
greatest long-term stress.You may also wish to seek information on more practi-
cal forms of support including day care for your relative or respite (a place
where your relative may go and stay for short periods of time) so that you and
the rest of the family have a break from your caring responsibilities. Some fami-
lies are not able to cope with severe and ongoing behavioural problems in the
long term and will request that their relative is accommodated elsewhere. This
can be a very difficult decision to reach, and local head injury teams and social
services care managers can support families facing such situations. Family
counselling alongside this can also help. Such decisions may also be accompa-
nied by other major and potentially stressful life events, such as moving house
or divorcing the injured person. Children in families facing these situations
require considerable support to manage the ‘pile-up’ of stress that can be
experienced.
144
As well as supporting your injured relative, you are likely to need to go on sup-
porting others in the family. This can be challenging and demanding, but chil-
dren in particular need support and information that is ongoing, up to date,
and relates directly to the current family circumstances. Research has shown
that when children are given this kind of continued support and information
about family illness they generally cope better.
Taking care of yourself and preventing ‘burn out’

It is also important for you to have a ‘blueprint’ for coping in the future, partic-
ularly if you are your injured relative’s main carer. The following might help:
◆ Gain the support of your GP Once your relative is no longer in touch with
head injury services, your GP will be your first port of call, along with
Headway, for advice and help. It is useful to try to establish a good collabora-
tive working relationship with him/her and for you to ensure that he/she is
familiar with your injured relative and his/her needs.
◆ Make contact with your local branch of Headway As you read this you
may not feel that you will need their support, but if this changes over time it
will be useful to have already familiarized yourself with what they can offer.
◆ Pay attention to how you are feeling It is important to recognize the
signs of burnout. These include increased irritability, feeling overwhelmed,
feeling unable to cope, severe fatigue and exhaustion, sleep problems, and
possible feelings of guilt and resentment (to name a few). What to do:
◆ seek advice from your GP
◆ counselling might help—ask your GP or Headway about what is
available
◆ recognize your own limits
◆ make time for yourself on a regular basis—and do pleasurable things
(have a massage or a beauty treatment, play golf, or take a long walk)
◆ pursue a hobby or attend a class
◆ practice relaxation
◆ try not to feel guilty when taking this time for yourself
◆ tap into your support network and learn to ask for what you need
◆ become comfortable with accepting help
◆ join a carers support group.
On a positive note
While much of this book has focused on the problems and difficulties
associated with head injury, it is important to end on a positive note for the
picture is not totally bleak. The process of recovering from head injury (for
both the injured person and their family), while challenging, is not always
negative. Families often report positive changes, such as having more time
145
together as a family, the strengthening of relationships, and having enhanced

ability to cope with life stress.
Conclusions
You may be reading, or re-reading, this book at any stage of your relative’s
recovery from head injury. We hope whatever stage of this journey that you are
at, you find something useful to take forward. As we have repeatedly stressed
throughout this book your relative’s head injury—and your family’s experience
of this—will be unique. On the one hand this means that it is not possible to get
definite answers to all your questions or accurate predictions of what to expect
next. We know that this level of uncertainty can be extremely hard to deal with.
On the other hand, however, it may also leave you with a degree of hope.
Families do adjust and deal with changes in their roles and relationships—and
the key is finding out what works for you as a family and identifying the support
that is available to you.
146
Appendix 1
Resources and
further reading
General
Headway—the national brain injury association for the UK. The national con-
tact will have a directory of local groups. 7 King Edward Court, King Edward
Street, Nottingham, NG1 1EW. National Helpline number: 0808-8002244;
www.headway.org.uk
BASIC—Brain and Spinal Injury Centre national helpline. Tel. 0800 750 0000
UKABIF UK Acquired Brain Injury Forum—directory of rehabilitation ser-
vices for ABI within the UK (2005): www.ukabif.org.uk
www.rehabuk.org—Provides information on rehabilitation services throughout
the UK (divided into geographical areas)
Carers UK 20–25 Glasshouse Yard, London, EC1A 4JT. Tel. 0808 8087777;
www.carersuk.org
NHS Direct Health encyclopedia–head injury: www.nhsdirect.nhs.uk
www.braininjury.co.uk—Free site providing information and links about brain
injury
Brain and Spine Foundation: www.brainandspine.org.uk
British Epilepsy Association—a national charity: www.epilepsy.org.uk
Brain Injury Rehabilitation Trust: www.birt.co.uk
National Service Framework for Long-term Conditions (2005): www.dh.gov.uk
Leonard Cheshire UK—charity provider of disability services: www.leonard-
cheshire.org
Social services department for your area: listed in telephone directory
Citizen’s Advice Bureau for your area: listed in telephone directory
Cognitive changes
Headway booklets: Memory problems after brain injury (B.Wilson); Psychological
effects of head injury (A. Tyerman). Available from Headway.
147
Head injury: a practical guide by T. Powell (2004). Speechmark Publishing.

Available from Headway.
Coping with memory problems: a practical guide for people with memory impairments,
their relatives, friends and carers by L. Clare and B.A. Wilson (1997). Available
from Harcourt Assessment (Tel. 01865 888188; www.harcourt-uk.com)
Internet resources: www.headway.org.uk; www.braininjury.com
Emotional and behavioural changes

Headway booklets: Managing anger; Psychological effects of head injury. Available
from Headway.
Head injury: a practical guide by T. Powell (2004). Speechmark Publishing.
British Association for Counselling and Psychotherapy: lists accredited coun-
sellors and psychologists within the UK. BACP house, 35–37 Albert Street,
Rugby, CV1 2SG. Tel. 0870 4435252; www.babcp.org.uk
British Psychological Society: www.bps.org.uk
MIND 15–19 Broadway, London, E15 4BQ. Tel. 0845 7660163;
www.mind.org.uk
Samaritans: 24-hour helpline. Tel. 0845 7909090; www.samaritans.org
Communication difficulties
Speakability—national and local support charity for people with aphasia. They
produce useful information leaflets and advice. Royal Street, London SE1 7LL.
Tel. 080 8808 9572 (helpline); www.speakability.org.uk
Connect—a charity for people with aphasia and their family and friends. They
produce excellent publications, information, and courses for people with aphasia,
their family and friends, and professionals: www.ukconnect.org
www.aphasiahelp.org: a website for people with aphasia
Royal College of Speech and Language Therapists: Tel. 020 7378 1200;
www.rcslt.org
Sexual functioning
To find a relationship and psychosexual therapist
www.relate.org.uk (this also provides information about relationships, sexual
problems, counselling on line, books about sex and relationships, and vibrators
for women)
www.basrt.org.uk
www.pinktherapy.org.uk (therapy for people who are lesbian, gay, bisexual, and
transgender)
148
Appendix 1 · Resources and further reading
For people wanting to meet others

www.outsiders.org.uk
www.disabilitynow.org.uk (general information including chat room and online
dating)
www.icasa.co.uk (training organization that also provides sexual therapy and
surrogate partners)
For information about sexual dysfunction, sexual health,

and sexual aids
www.sda.uk.net (Sexual Dysfunction Association provides information about
male and female sexual dysfunction)
www.bbc.co.uk/ouch (reflects the lives and experiences of people with disabilities;
has regular columns, features, quizzes, and message boards)
www.bbc.co.uk/relationships (provides information about intimacy, conflict,
sexual health, sexual problems, dating, and bereavement)
www.beecourse.com (supplies books informing about sexual health, relationships,
and sexual problems; also supplies sexual aids and toys)
www.owenmumford.com (supplies sexual aids)
Supporting children
For adults
My Mum needs me by J. Segal and J. Simkins (1993) is actually about Multiple
Sclerosis in the family but is a useful book for adults to read about children’s
reactions to parental illness generally
Lash Publishers (based in the USA) have an excellent range of publications for
adults and children about head injury (and other disabilities). These can be
ordered from their website: www.lapublishing.com
For children
The website www.kidshealth.org has a very useful section called “The brain is
the boss” which teaches children how the brain works
My Mum/Dad has had a head injury is a booklet written for children by Wendy
Murray, Social Worker, Lunan Park Resource Centre, Guthrie Street,
Friockheim, Arbroath, DD11 4SZ. Tel. 01241 826903. The booklet can be pur-
chased directly from Ms Murray, but you could also ask your local head injury
team if they have a copy
The Children’s Brain Injury Trust (CBIT) has information leaflets about head
injury for siblings: www.cbituk.org
149
Headway booklet: My Dad’s had a brain injury (written for children). See their
website (www.headway.org.uk) or ask your local Headway branch if they stock
it (branch contact information can be found on their website)
There is an excellent Australian-based website for children (about the brain and
injuries) at www.health.qld.gov.au. The children’s section is called Brain Crew
Kids Zone and contains ‘Brain facts’, ‘Brain quizzes’, and personal accounts of
family head injury, written by children. The site also includes information for
adults
Driving
Ricability (a charity publishing information on products and services for people
with disabilities) 30 Angel Gate, City Road, London, EC1V 2PT. Tel. 020 7427
2460; www.ricability.org.uk. They also produce a booklet Motoring after brain
injury
DVLA—Drivers Medical Unit, D6, DVLA, Longview Road, Swansea, SA99
1TU. Tel. 01792 783686
Headway booklet: Driving after brain injury
Driving after stroke (The Stroke Association)—although written for people who
have had a stroke, this booklet provides useful information on car adaptations,
and lists car modification firms and UK driving assessment centres
The Disabled Motorist (www.disabled-motorist.co.uk) produces information
on all aspects of mobility and disability. Also produces a monthly magazine
Legal issues
Headway—provides excellent information, and care and support for people
affected by brain injury. Tel. 0115 924 0800; www.headway.org.uk
Association of Personal Injury Lawyers: Tel. 0115 958 0585; www.apil.org.uk
Criminal Injuries Compensation Authority: Tel. 0800 358 3601; www.cica.
gov.uk
Motor Insurance Bureau: Tel. 01908 830001; www.mib.org.uk
Mental Capacity Act 2005—information available at www.opsi.gov.uk/acts/
acts2005
Independent Mental Capacity Advocate Service—information available at
www.dh.gov.uk/socialcare
The Office of The Public Guardian and Court of Protection: Tel. 0845 3302900;
www.publicguardian.co.uk
150
Appendix 1 · Resources and further reading
Some currently relevant published guidelines on the

pathways, services, and treatments that should be
available following head injury (March 2008)
National Service Framework (NSF) for Long-term Conditions (2005),
Department of Health
This is often cited in public announcements from the UK Government and the
Department of Health. It is not just about head injury but places emphasis on
all long-term neurological conditions. It is perhaps worth mentioning that many
of the recommendations cannot be carried out with the current level of staffing
and resources in the UK National Health Service. The framework has been
set up as a 10-year plan for gradual change. It is stated that the intention of
this framework was that the services for all people would become more person
and family centred, easier to access, and more equitable across the country.
In addition, the pathways that patients and their families take through the vari-
ous services are expected to become more stream lined, better coordinated, and
easier to understand.
Medical rehabilitation for people with physical and complex disabilities:
A report by The Royal College of Physicians Committee on Rehabilita-
tion Medicine (2000)
This is much less high profile but it is used by rehabilitation professionals when
auditing their own services or trying to develop them.
Head injury-specific guidelines
The following recent guidelines have been produced specifically on traumatic
or acquired brain injury. They are produced to offer guidance to professionals
working with head-injured people and their families, but cannot be used to
specify what sort of treatment or support any particular person should be hav-
ing at any particular time because every head-injured person will be in a very
individual situation and professionals are expected to make their own judge-
ments about what management and treatment is needed, depending on the
exact nature of their patients situation.
Head injury—triage, assessment, investigation and early management of head injury
in infants, children and adults. NICE (National Institute for Clinical Excellence),
2003 (updated 2007)
This includes excellent information produced for patients, carers, and families,
and for the general public. It focuses on the early stages (first 48 hours) and
includes guidance on what to do if someone has a head injury and what should
happen in any admission to hospital and after discharge home. It does not
discuss rehabilitation. These guidelines have recently been updated (2007).
Rehabilitation following acquired brain injury—national clinical guidelines. British
Society of Rehabilitation Medicine and the Royal College of Physicians, 2003.
151
This complements the NICE guidelines and provides guidelines and sets
standards of care and rehabilitation/treatment essential for the longer term to
prevent the development of long-term complications and ensure that people
return to as good a quality of life as possible following their injury.
International working party report on the vegetative state. The Royal Hospital for
Neuro-disability, Putney, 1996.
This is still referred to by both medical and legal professionals. It is likely to be
updated in the next few years.
152
Appendix 2
Information for younger
children (aged 7–10)
This section should be read with a parent or an adult.
Brains, bones, and other body bits!

You are probably reading this because someone in your family (maybe
your mum or dad) has had an injury. The injury they had is called a head
injury.
When someone has a head injury it can be very upsetting and worrying for all
the family, including you.
We hope that when you read this you will understand more about head injury.
We can feel less afraid and worried when we know what is going on.
We also hope that it will help you to talk more to your family about what has
happened. We can often feel more upset if we keep our feelings and worries
inside.
We don’t know how much you know already about the injury your relative had,
but we are sure that you will have a few questions about it.You may read answers
to some of your questions here. If you have any more questions, you could write
them down and ask an adult to help you find the answer. There are also books
and websites that can tell you more.
What is a head injury?

A head injury is when the head and the brain (which is inside the head) get
hurt. Sometimes a head injury is called a brain injury. There is a drawing of the
head and brain in Chapter 2.
Who can get a head injury?

Anyone can have a head injury. Men and women and girls and boys can have a
head injury.
153
Why does a head injury happen?

Most people have a head injury because of an accident. This could be a car
accident, falling off something high (like a ladder), or being hit on the head by
something.
Many children we have spoken to were worried that they might have made their
relative’s injury happen—maybe because they had been naughty or by causing
trouble.
Some children think they might have been able to stop the injury from happen-
ing or wish that they had been nicer to the person who got hurt.
It’s normal to worry about this but, REMEMBER, your relative’s injury
did not happen because of anything you did and they would not want
you to worry about this.
What happens when someone has a head injury?

Most people go to hospital when they have had a head injury. If their injury is very
bad they might have to go in an ambulance or a special helicopter ambulance. This
is scary for everyone (but a bit exciting too!). At the hospital their injury is
looked at by doctors to see how bad it is and they are given tests (like X-rays)
and sometimes medicine to stop them hurting.
After this, most people can go home and they usually get better quite soon.
Some people, who have more serious injuries, will have to stay in hospital. This
could be for months if they are very poorly. Everyone is different, and so it
might take some people longer to start to feel better. They usually need help
from different people at the hospital to get better. Children can usually go to
visit their relative when they are in hospital and the staff might show you some
things that you can do that you will both enjoy.
Most people do not die because of a head injury—but a few do. This is because
the head injury was so bad that even the doctors could not make things better.
This is very sad for everyone in the family and they need lots of help if this
happens. You might have worried that your relative would die—lots of children
feel like this—it helps to tell someone else in the family so they can talk to you
about this and tell you what is happening.
What kinds of problems can people with head

injuries have?
When someone has a head injury their brain is usually injured too. Hurting our
brains can lead to many different types of problems. This is because the brain
controls all of our body including our thinking, our talking, and how we feel
and behave.
154
Appendix 2 · Information for younger children (aged 7–10)
If you hurt one part of your brain, you will have one type of problem; if you hurt
another part of the brain, you will have a different type of problem. This is
because different parts of the brain all have different jobs. You could look at
websites to learn more about the brain—it is fascinating.
People with head injuries may find it hard to control parts of their bodies. They
might not be able to walk or use their arms as well as before. They may also
have problems talking or understanding what people are saying (which can
cause lots of upset and confusion), or they may find it hard to remember things
or to concentrate. They may be more bad tempered or angrier than they used to
be as well or perhaps very sad.
It can be very hard to understand the changes that head injury causes—the
injured person can look exactly the same as they did before they were hurt but
they can act differently. How they act can upset you, or make you angry or
embarrassed. You might not want your friends to see them like this. Sometimes
they can make you laugh too!
Try to remember that they have changed because of the accident—not
because of anything you did and not because they want to upset you.
Do head injury problems get better?

Yes—lots of problems after a head injury can get better.
However, it can take a very long time for things to get better and even after
many years people with head injuries can still have problems. It is very hard for
the doctors to know who will get better and how long it will take—usually we
just have to wait and see what happens.
Some people have problems that never go away, and this can make life hard for
them and their families. Staff from the hospital will try to help families find new
ways of doing things. Sometimes people with head injuries who have a lot of
problems have to be looked after by people who are specially trained. This
means that they have to live away from the family, which can be sad.
How does it feel to have a head injury?

We can’t really know how it feels if we don’t have the injury. People with head
injures can be very upset about what has happened and worry about whether
they will get better. They can seem sad or angry about it all. If people have
problems with their memory, they might feel very confused and not know what
is going on.
Other people who have head injuries are not as upset about it. Perhaps you
could ask your relative how they are feeling—or ask another adult to tell you
more.
155
How does the rest of the family feel when a head

injury happens?
Every family gets upset and worried when someone has a head injury, especially
as no one is sure what is going to happen.
The adults might be sad and crying; they might be at the hospital a lot and not
have much time for you and your normal family things. This can make you feel
annoyed. When the injured person comes home from hospital they might not be
able to do the things they used to do, like drive the car or go to work, and other
people in the family might have to take on some of their jobs. This can some-
times make people tired and upset. You might also have to do some extra jobs
around the house to help out.
Sometimes the person with the head injury needs help to look after themselves,
like having help to take a bath or to go to the toilet. If you are worried that you
will have to help them do these things, talk to a grown-up.
There can be lots of changes to get used to after someone has a head injury—it
can take time for things to feel OK again. It helps to tell someone when you are
worried about anything.
How do children feel when head injury happens in

the family?
Not everyone feels the same about head injury. Some children feel OK, but
other children feel worried and sad and find it hard to get on with things. They
don’t enjoy school as much as before and might not do so well with their work.
Also, they might not get on with others in the family as well as before. Many
children have worries—about the person who is ill, about the rest of the family
and about themselves. Feelings can get very mixed up. Some days they feel sad,
and other days they might feel afraid. Some children are angry that the accident
happened and feel that their life has been ruined. It is normal to feel like this for
a while. The good thing is that these feelings don’t last forever. It will help if you
tell someone about them.
Remember, there is no right or wrong way to feel about a head injury; whatever
you are feeling is OK.
What can help you feel better?

◆ Find out how the brain works and what can go wrong when it is injured.
Children who have done this said it made them feel a bit better as they
understood more.
◆ Try to remember that none of this was your fault.
156
Appendix 2 · Information for younger children (aged 7–10)
◆ Talk to an adult whom you like and trust about your worries. They will
help you find a way to feel better about things.
◆ It can help to write down your worries, questions, or feelings—perhaps
in a special notebook.
◆ Try to remember that even though they have had an injury and may
have changed, your relative still loves you.
Do you want to know more?

We hope that reading this has helped to answer some of the questions. However,
there are always some questions that we haven’t been able to answer you might
have and we are sorry if we have missed yours out. It might help to speak to the
adult who gave you this book. If you feel upset or worried, please talk to an adult
straight away.
Ask your local library if they have any books about the brain. Also, here are
some websites that you might want to look at:
◆ the website www.kidshealth.org has a great section called ‘The brain is the
boss’ which teaches you how the brain works
◆ go to www.health.qld.gov.au and click on the children’s section called Brain
Crew Kids Zone which has fun ‘Brain facts’ and ‘Brain quizzes’.
157
Appendix 3
Information for young
people (aged 11–15)
Understanding head injury

This book is about head injury and you are probably reading this bit of it
because someone in your family has been injured.
Head injury is a very common problem and many people are affected by it (see
Chapter 2 of this book if you want to know more), so there will be many other
young people, like you, dealing with this upsetting event.
Head injuries happen very suddenly, without warning, and so coping with them
can be difficult. Therefore we have written this part of the book especially for
you to try to help you through this experience. We hope it will help you to:
◆ Understand more about head injury Having information about some-
thing can help improve our understanding of it and possibly help us to feel
less confused, worried and upset.
◆ Find ways to get support and help for yourself It can help to share your
concerns and worries with someone you can trust. Difficult feelings can
build up and become troublesome if kept to ourselves. However, talking to
others about our feelings is not always easy, so we will also suggest other
ways you can support yourself.
We don’t know how much you know already about your relative’s head injury;
even if you have a lot of knowledge, it is likely that you will still have a few
questions. We have written this section based on the questions that we are most
often asked by people of your age. As you read this, if you have any further
questions, write them down as they come to mind and ask an adult in the family,
or someone else you trust, to help you find answers. The Internet has many use-
ful websites about the brain and head injury and these are listed at the end.
What is a head injury?

A head injury is when the head and the brain get hurt or damaged. Head injury
is also sometimes called a brain injury, a traumatic brain injury (TBI), or an
acquired brain injury (ABI).
159
Who can get a head injury?

Anyone of any age can have a head injury.
Why does a head injury happen?

Most head injuries happen because of an accident. This could be a car accident
(often called RTAs or road traffic accidents), a fall (perhaps off a ladder), or if
the person is hit on the head by something (this can happen if the person is in a
fight).
Even though there is usually an obvious cause of the injury, many children and
young people blame themselves for it. They worry that they could somehow
have caused it (this may seem like a strange idea but it is actually a very
common worry). Some young people worry that the accident happened to ‘pay
them back’ for things that they have done wrong (like arguing with their parents
or getting into trouble at school). They also think that they might have been
able to prevent the accident happening (by having done something differently
on the day) or wish that they had been nicer to their relative before the injury.
It is important for you to know that your relative’s injury did not happen because
of anything you did and they would not want you to worry about this.
What happens when someone has a head injury?

Most people who have had a head injury will have to go to hospital where staff
will work out how severe the injury is and decide on the best way to treat them.
Some people can go home after they have been checked out and will probably
get better quite soon.
Some people, who have more serious injuries, will have to stay in hospital. They
will usually need more tests (such as brain scans), be monitored to make sure
they don’t get worse, or have an operation on their brain. They might need to be
transferred to ICU (intensive care) and then later move to another ward to
recover. Waiting for them to be well enough to leave ICU can be very stressful;
visiting them there can also be difficult as they might be unconscious (not awake
or aware of what is happening around them), confused (and possibly not recog-
nize you), or be attached to lots of machinery (e.g. to help them breathe).
This is a normal part of recovering from a head injury, but it can be upsetting
and frightening to see your relative like this. Some young people don’t want to
visit the hospital—and this is OK. Find other ways of staying in touch with
them instead, like sending cards.
People with head injuries might remain in hospital for many weeks or even
months. They may have rehabilitation (treatments to help overcome some of the
problems after the injury) in another hospital before they go home, or attend
hospital clinics from home. Recovery is usually very lengthy.
160
Appendix 3 · Information for young people (aged 11–15)
Unfortunately, some people do not recover completely and can carry on having
problems when they get home. This can be very stressful for everyone. A small
number of people do not recover from their injury and, because they have
so many problems, cannot go back home to live. Instead, they have to live in
a place where they can be cared for by trained staff (such as a nursing home).
It can be very sad when this happens, but usually everyone tries very hard to
stay in touch and to visit.
Most people do not die because of a head injury, but a small number do. This
might be due to the injury itself, or because of other problems that can develop
afterwards, such as infections. Again, this is very hard for everyone in the family
and they need a lot of support to cope with this.
What kinds of problems can people with head

injuries have?
Because a head injury results in damage to the brain, people can have a wide
range of problems:
◆ physical problems (e.g. cannot walk or use their arms)
◆ cognitive (thinking) problems (e.g. poor memory, problems concentrating,
problems understanding what people say)
◆ emotional (feelings) problems (e.g. sadness, worry, depression, anger)
◆ behavioural (how we act) problems (e.g. being more aggressive, shouting,
sitting still and doing nothing, doing or saying things quickly without
thinking)
◆ relationship problems (e.g. arguing with relatives, ignoring others)
Sometimes these problems are so severe that the person seems very different to
how they were before their injury. When these problems are very severe, the per-
son cannot go back to work or be able to look after their family like they used to.
Understanding these problems can be very difficult—the injured person can
look exactly the same as before the injury, but now they can act differently. Their
behaviour can upset you, or make you angry or embarrassed, and you might not
want your friends to see them like this. Sometimes, you might find things that
they do funny, but they can get angry with you when you laugh at them.
Try to remember that they have changed because of the accident—not because
they want to upset you, or because of anything you did. They still love you, even
if it does not always seem like it.
The type of problems your relative will have depends on which parts of the
brain have been injured. This is because different parts of the brain are respon-
sible for or control different skills and abilities. However, the workings of the
brain and what happens to it when it is injured are complex (and fascinating)
topics. To learn more visit the www.washington.edu website. Enter ‘Chudlar’
161
into their home page search box and this will take you to ‘Neurosciences for
kids’ where you can learn amazing facts about the brain.
Do head injury problems recover?

Yes—lots of problems after a head injury can improve. It can help if you can
find ways of ‘getting around’ problems (like helping them use a calendar to
remember things if they have a poor memory).
However, recovery from head injury can be lengthy, and even after many years
people with head injuries can still have problems. If the injury was very severe,
the person will probably have some problems for the rest of their lives. This can
be upsetting as everyone wants them to return to ‘normal’.
The problem is that it is very hard for doctors to work out who is going to
get better and how long it will take. Usually we just have to wait and see what
happens.
How does it feel to have a head injury?

It is difficult to answer this as we have not had a head injury. However, in our
experience, people with head injures are usually upset and distressed about
what has happened and worry about whether they will get better. They can be
sad or angry about it all. If people have problems with their memory, they can
feel very confused and might not be sure about what is going on.
However, some people are not as upset by having a head injury. This might be
because they do not fully understand how serious their problems are or it could
be because they have found helpful ways to cope with it.
Perhaps you could ask your relative about how they are feeling—or ask another
adult to tell you more.
How does the rest of the family feel when a head

injury happens?
Every family gets upset and worried when someone has a head injury. It can be
a very difficult time for everyone, especially as no one is sure what is going to
happen. Adults in the family may seem very sad or worried, and they might be
away from the family home caring for your relative at the hospital. This can
result in normal family activities stopping for a while. When the injured person
comes home from hospital they might not be able to do the things they used to
do, like drive the car or go to work, and so other people in the family might have
to do these things instead. This can sometimes lead to tension and make people
tired and upset.You might also be asked to do some extra jobs around the house
to help out.
Sometimes the person with the head injury needs help to look after themselves,
e.g. help having a bath or going to the toilet. If you are afraid that you will have
162
Appendix 3 · Information for young people (aged 11–15)
to help them do these things, discuss this with an adult. It is important not to
do things that make you feel uncomfortable.
There are many changes to get used to after a head injury and it can take time
for things to feel OK again. It helps to tell someone when you are worried about
anything.
How do young people feel when head injury

happens in the family?
Not everyone feels the same about head injury. Some young people feel OK and
can get on with their normal life. Others are much more worried and sad and
find it hard to get on with things. They can find going to school very difficult
and may not do as well with their work as they did before. This might be because
worrying about their relative makes it hard to concentrate. Sometimes friends
can ask difficult questions about the injured person or make hurtful comments
about them, which are hard to handle.
Some young people find that they argue more with others in the family. They can
have many worries—about the person who is ill, about the rest of the family, and
about themselves. Being asked to do extra jobs around the house or to ‘look
after’ the injured person can be very annoying, especially if this stops you from
going out with your friends. There might also be less money coming into the
house (if the injured person is not working) and so you might not be able to
have the things you used to have. If friends notice, this it can be hard.
Feelings can get very mixed up. Some days you might feel sad; other days you
might feel worried or guilty. Many young people feel angry that the accident
happened and think that their life has been ruined, and it is common to want
to get revenge on any other people involved in the accident. This can be a very
strong and frightening feeling, but it is normal and many people feel like this for
a while. The good thing is that these feelings don’t last forever and will be easier
if you tell someone about them.
Remember, there is no right or wrong way to feel about a head injury. Whatever
you are feeling is OK.
What can help you feel better?

◆ Try to find out as much as you want to about how the brain works and
what can go wrong when it is injured. Knowledge about head injury can
make coping with it easier.
◆ Try to remember that none of this was your fault.
◆ Talk to an adult whom you like and trust about your worries, if you can.
They will try to help you find ways to feel better about things. However,
163
young people often prefer to talk to friends or people outside the family
about worries. If you can, tell your closest friends what is going on.
Perhaps you could show them this book so that they can start to under-
stand better. Is there a teacher at school you could talk to? You could
also make an appointment to see your own family doctor who can talk
about worries with you. If you do not want to speak to anyone face to
face you could telephone Childline on 0800 1111. Your local branch of
Headway, which is a charity that supports people with head injury and
their families, might have family groups or groups for teenagers. They
have a website (www.Headway.org.uk) that can tell you what is going on
where you live. Many carers centres (see www.carers.org.uk to find out
if there is one near you) also have groups for young people.
◆ It can help to write down any worries, feelings, or questions in a diary or
journal. Later it can help to look back on the situation to see how things
have changed.
◆ Try to remember that even though they have had an injury and may
have changed, your relative still loves you.
Do you want to know more?

We hope that reading this has helped answer some of your questions. However,
there will always be questions that we haven’t been able to answer and we’re
sorry if we have missed yours out. It might help to speak to the adult who gave
you this book. We also hope that reading this has not upset you. If it has made
you feel worried, please talk to an adult straight away.
Ask your local library if they have any books about the brain. Also, here are
some websites that you might want to look at:
◆ the website www.kidshealth.org has a great section called ‘The brain is the
boss’ which teaches you how the brain works
◆ go to www.health.qld.gov.au which is a very good website for families (there
is also a children’s section called Brain Crew Kids Zone).
164
Glossary
Acceleration and deceleration injuries damage sustained when the brain
is suddenly subjected to forces that throw it forwards and backwards inside
the skull
Acute care hospital care provided soon after injury or illness
Acquired brain injury (ABI) any form of injury to the brain that is not congeni-
tal (i.e. not present at birth). It includes a range of conditions including stroke
and head injury
ADL activities of daily living (such as bathing, dressing, eating)
Agnosia the loss of ability to recognize and identify previously well-known
objects
Amnesia partial or complete loss of memory. The following terms are
also used:
◆ Post traumatic amnesia (PTA) the time after head injury during which the
person is confused and unable to take in new information
◆ Anterograde amnesia specific difficulties remembering events since the
injury/illness
◆ Retrograde amnesia loss of memory for events prior to the injury/illness
Amygdala a cluster of nerve cells in the temporal lobes. The amygdala is part
of the limbic system
Ankle–foot orthosis (AFO) a leg brace
Anterograde amnesia see amnesia
Anticonvulsants (or anti-epileptics) medication used to decrease the occur-
rence/recurrence of epileptic seizures
Aphasia (sometimes called dysphasia) aspeech and language disorder that can
affect all aspects of language—understanding what is said to you, the ability to
find words and sounds to speak, and the ability to read and write
Apraxia difficulty performing voluntary movements or actions (such as waving
goodbye). Specific difficulties are experienced in thinking about and planning
movements
165
Aspiration when food or fluids enter the lungs through the windpipe (this can
lead to infection of the lungs or pneumonia)
Ataxia the arm or leg performs jerky and clumsy, uncoordinated movements. It
is usually caused by damage to the cerebellum
Autonomic functions those bodily functions, such as heart rate and breathing,
that are not under our voluntary control
Axons fibre-like parts of nerve cells that are used to send messages rapidly from
one part of the brain to another
Basal ganglia cluster of nerve cells deep within the brain hemispheres which
are involved in performing movements
Behaviour therapy a psychological approach to changing behaviour
Brain death the state when the brain stem permanently ceases functioning
Brainstem the part of the brain that is in charge of the body’s most vital func-
tions such as breathing, heart beat, wakefulness, and control of hormones
Capacity see mental capacity
Catheter a tube used to insert or withdraw fluids from the body (e.g. urinary
catheter is used to withdraw urine from the bladder)
Central nervous system (CNS) the brain and the spinal cord make up
the CNS
Cerebellum the part of the brain that plays a role in coordinating our
movements
Cerebrospinal fluid (CSF) a watery fluid in and around the brain which pro-
vides it with some protection
Cerebrum The main part of the brain, which is made up of two hemispheres
Clonus rhythmic shaking of a limb caused by rapid contraction and relaxation
of muscles
Closed head injury the most common head injury, in which the skull is not
penetrated
Cognitive communication difficulties communication difficulties secondary to
cognitive impairment (such as difficulties joining in a conversation because of
reduced attention or slowed information processing speed)
Cognitive impairment problems with essential ‘thinking abilities’ such as
problem-solving, memory, planning
Coma a state in which a person remains fully unconscious and unrousable
Compensatory techniques a range of strategies and aids that head-injured peo-
ple are taught to use to reduce the impact of problems arising from the injury in
everyday life (i.e. using a diary can compensate for having a poor memory)
166
Glossary
Contractures stiffness in the soft tissues around joints, caused by shorten-

ing of muscle fibres and development of fibrous tissue in the surrounding soft
tissues
Contrecoup injury in addition to the initial contusion at the site of impact, the
brain is often also injured at the opposite side as it keeps wobbling back and
forth
Contusion bruising of the brain. Cells of the brain are crushed and destroyed
when they are thrown against the inside of the skull
Cortex the surface of the brain, which is involved in intellectual functioning.
It contains billions of neurons
Cranium the skull
Crushing injury an injury that occurs when the head is compressed from two
sides
CT scan computed tomography. A kind of X-ray examination which can show
the brain and other parts of the body (also known as a CAT scan)
Deep vein thrombosis (DVT) blood clots that form in the veins, typically in the
deep veins of the legs
Diffuse axonal injury widespread damage to the axons (the connections
between nerve cells) in the brain
Disinhibition saying or doing things without thinking, being unable to control
feelings
Disorientation being unable to know where you are, current date, etc.
Dysarthria a speech disorder caused by weakness of the muscles of speech or
difficulty coordinating them. The speech sounds slurred and may be difficult to
understand
EEG (electroencephalogram) the electrical activity of the brain is measured
with electrodes on the surface of the skull. This is used to look for signs of
epilepsy
Egocentric behaviour focusing on one’s own needs and being unable to
consider the needs of others
Emotional lability being unable to control emotions fully
Emotional numbness showing no emotions or a ‘blunting’ of emotional
responses
Encephalitis inflammation of parts of the brain itself
Epilepsy recurring seizures (or fits/convulsions). Seizures occur when brain
cells become over-excited and generate electrical impulses which spread errati-
cally throughout the brain
167
Executive abilities a range of complex thinking processes such as planning,

problem-solving, and control of behaviour and emotions
Extradural haematoma bleeding between brain surface and skull
Fibre-optic endoscopic evaluation of swallowing (FEES) a procedure in which
a camera is passed up the nose and into the throat in order to observe muscle
movement and residue when a patient swallows
Frontal lobes the part of the brain just behind the forehead. They are in charge
of our higher-level thinking skills, initiating and planning our movements and
actions. The left frontal lobe is necessary for speaking
Functional electrical stimulation (FES) a treatment method in physiotherapy
which activates muscles with electric impulses
Gait pattern of walking
Gastrostomy feeding tube that is inserted into the stomach (through the wall of
the abdomen) to provide nutrition to the patient
Glasgow Coma Scale (GCS) a simple method of measuring a person’s level of
consciousness
Grand mal epileptic seizure a person loses consciousness, falls to the ground,
the body stiffens up, and both arms and legs go into violent shakes (also known
as a tonic–clonic seizure)
Grey matter the cortex of the brain and some parts deep inside the brain with
a high density of nerve cells
Haematoma bleeding caused by ruptures of blood vessels
Headway The UK’s national head injury charity and support organization
Hemianopia a state in which patients cannot see what is on one side of their
visual fields of both eyes—either on the right side in both eyes or the left side
in both eyes
Hemineglect unawareness or lack of attention to one side (mostly the left) of
space/the world around you. This can include lack of awareness of one side of
the body
Hemiparesis weakness on one side of the body as a result of damage to the
opposite side of the brain. The arm, the leg, and sometimes the face are weak
on the same side
Hemiplegia paralysis on one side of the body
Hemispheres the two halves of the brain
Hydrocephalus collection of too much cerebrospinal fluid within and around
the brain. This causes the pressure within the skull to increase
Hydrotherapy physiotherapy performed in a swimming pool
168
Glossary
Hypothalamus part of the brain involved in regulating the body’s ‘internal

environment’ and keeping it in balance (e.g. it is involved in the control of blood
pressure, body temperature, hormone release, hunger, and thirst)
ICP see intracranial pressure
ICU the intensive care treatment unit of a hospital which provides continual
monitoring of patients who are in a serious condition after injury
Incontinence difficulty in controlling the bladder and bowels
Information processing speed (or thinking speed) the time taken to think
through and process information
Intracerebral haematoma bleeding within the brain matter
Intracranial pressure (ICP) the pressure inside the skull, which can be increased
in certain conditions such as oedema
Interdisciplinary professionals of different disciplines work together collabora-
tively to achieve shared patient goals. This is different from multi-disciplinary
where professionals from different backgrounds work alongside each other (but
not necessarily collaboratively) to achieve patient goals
Lightwriter a high-tech device that can help someone who is unable to speak
to communicate
Limbic system parts of the brain that work together to produce what we experi-
ence as emotions or feelings
MRI (Magnetic Resonance Imaging) produces a picture of the brain using
a strong magnetic field rather than X-rays. It provides a more detailed picture
than a CT scan
Meningitis an inflammation of the membranes around the brain
Mental capacity Having the ability to make decisions (e.g. about financial
affairs)
Mental Capacity Act 2005 new legislation in the UK to protect people who
cannot make decisions for themselves. It provides clear guidelines for carers
and professionals about who can take decisions in which situations
Minimally responsive state people who appear to have some, but little and
fleeting, awareness of what is going on around them. They are not in a coma but
neither are they fully alert
Motor functioning movement—includes both gross movements and fine motor
skills
Nasogastric tube a plastic tube inserted through the nose into the stomach
through which feeding is given
169
Neglect being unaware of one side of space (ignoring things on one side, or
ignoring one side of the body). This is a form of attentional impairment
Neuro-rehabilitation rehabilitation within the context of neurological injury or
illness (see rehabilitation)
Neuron a nerve cell—the brain is made up of billions of these
NICE guidelines recommendations for the prevention and treatment of ill
health produced by the independent organization called the National Institute
for Clinical Excellence (NICE)
Nystagmus jerky movements of the eyes usually due to damage to the brainstem
Occipital lobes situated at the back of the brain. They are involved in process-
ing what we see
Oedema swelling of the brain by accumulation of too much water, usually
caused by damage to the brain
Open head injury head injury caused when an object fractures and enters the
skull, damaging the brain directly (also called a penetrating injury)
Paraparesis weakness in both legs
Parietal lobes located at the top of the brain. They are involved in feeling touch
and pain, arithmetic, focusing our attention, and orientating ourselves
PEG (percutaneous endoscopic gastrostomy) a tube inserted surgically through
the skin directly into the stomach. This allows a person to be fed over a long
period
Penetrating head injury see open head injury
Perceptual functioning our ability to make sense of information coming in from
our senses (i.e. what we see, hear, feel)
Permanent vegetative state a patient who stays in a vegetative (non-
responsive) state over more than 12 months
Perseveration a pattern of thinking or behaving characterized by becoming
fixed on, or returning repeatedly to, one topic or task and being unable to
switch to an alternative
Persistent vegetative state a patient who stays in a vegetative (non-responsive)
state for more than a month
Plasticity the ability of the brain to repair some of the damage that has
happened in an injury
Pneumonia infection or inflammation of the lungs
Post-acute care care delivered once the individual is medically stable.
This may occur in the hospital or in a rehabilitation setting
170
Glossary
Post-concussion syndrome a group of symptoms including headache,

dizziness, concentration problems, forgetfulness, and fatigue that commonly
occur after mild head injury
Post-traumatic amnesia (PTA) the time after head injury during which the per-
son is cofused and unable to take in new information (see amnesia)
Post-traumatic stress disorder (PTSD) an extreme form of anxiety disorder
which can develop after a traumatic and life-threatening event. Symptoms of
PTSD include emotional numbness, flashbacks to the event, nightmares, and a
strong tendency to avoid reminders of the event
Pressure sores (or pressure ulcers) damage to the skin which occurs when an
area of the body is exposed to pressure or friction for long periods of time
Prognosis the prospect of further recovery after illness or injury
Prospective memory your memory for things in the future (e.g. remembering to
keep an appointment)
Reduced insight limited awareness of the changes that have happened to you
after head injury
Rehabilitation an active dynamic process whereby an injured or ill person is
helped to achieve their optimal level of functioning (see neuro-rehabilitation
and vocational rehabilitation)
Reflex an involuntary and fast action (such as the knee jerk reaction) which
does not involve the brain
Respite a temporary rest period from care responsibilities
Retrograde amnesia loss of memory for events prior to the accident/injury (see
amnesia)
Rotation injury injuries that occur when the brain turns inside the head sud-
denly and quickly
Sedation giving someone medication to put them to sleep or calm them down
Seizures fits or convulsions (see epilepsy)
Spasm short-lasting stiffening or jumping of a limb
Spasticity stiffness of an arm or leg (also called increased muscle tone)
Stroke occurs when the blood supply to the brain is disrupted in some way
(e.g. due to a blocked blood vessel) leading to brain cell damage and death
Subdural haematoma bleeding between the brain surface and the skull
Suprapubic catheter a plastic tube that is inserted surgically through the
abdominal wall into the bladder
171
Temporal lobes located at the sides of the brain. They are involved in hearing,
understanding language, and memory
Tetraparesis weakness in all four limbs (also called quadriparesis)
Tinnitus a sensation of ringing or buzzing in the head which is not related to
noise outside
Total communication a way of communicating involving more than just speech.
It involves encouraging all means of communication, including gesture, facial
expression, written words, and drawings
Tracheostomy an artificial opening made in the windpipe (through surgery) to
allow breathing
Traumatic brain injury (TBI) sudden-onset brain injury caused by trauma
such as falling, car accident, or assault
Tremor rhythmic shaking of a limb
Vegetative state the patient has no apparent awareness of what is happening to
them, but the body still keeps the heart beating and often the breathing going.
A kind of sleep–wake cycle develops
Ventilation if a person cannot breathe for themselves, a machine (ventilator)
will do it for them by regularly pumping air into their lungs
Vocational rehabilitation rehabilitation focused on helping people to resume
work following illness or injury (see rehabilitation)
Ventricles spaces within the brain that are filled with fluid (see cerebrospinal
fluid)
Verbal dyspraxia difficulty in programming and sequencing the movements of
speech muscles to make speech sounds and sequence them in words
Vestibular system helps to keep equilibrium or balance
Videofluoroscopy examination of swallowing using X-rays
Vital signs blood pressure, heart beat, breathing sounds of the lung, and tem-
perature
White matter areas of the brain that are made up of nerve cell fibres connecting
other brain areas
Young carer refers to children and young people under the age of 18 who are
providing significant and regular amounts of care
172
Index
absences 52 fatigue 51
acceleration injuries 14 mobility problems 47
accessibility problems 115 aphasia 74, 75
access visits 36 apraxia/dyspraxia 45, 66, 74, 75
Accident and Emergency (A&E) department arousal, difficulties with 96, 97
initial assessment 28 artificial coma see sedation
accident site, management at the 27–8 aspiration 48
accompanying injuries 16 Association of Personal Injury
management 29, 31 Lawyers 150
acupuncture 55 ataxia 45
acute treatment phase attentional problems 62–3, 67–8
accident site, management at the 27–8 awareness, reduced 64–5, 71
common problems and complications 31 see also low-awareness states
epileptic seizures 30 axons 39
focus of care 31–2
further investigations/assessment 28 balance problems 50–1
hospital management 28 balance retraining exercises 51
immediate treatment/getting to basal ganglia 11
hospital 27 befriending schemes 135
intensive care unit 30 behavioural changes 83, 88–9
mild head injury 28–9 causes 84–6
moderate or severe head injury 29–30 coping with 90–2
open ward, transfer to the 30–1 disinhibition 64, 89
aggressive behaviour 90, 93 egocentricity 64, 89
agnosia 66 executive functioning problems 63, 64
alcohol 55 family issues 105, 119
alternative therapies 55 children 122
amnesia see post-traumatic amnesia longer-term adjustment 144
amygdala 12 impulsive behaviour 89
anaesthetists 25 looking after yourself 92–3
anarthria 76 overview of common problems 83–4
anger passivity and withdrawal 64, 89–90
family members 109 resources 148
relative with head injury 36–7, 87 specialist rehabilitation services 34, 35
ankle–foot orthoses (AFOs) 46 benefits system 138
anticonvulsant drugs 30, 52, 53 bladder problems 53–4
alcohol 55 bleeding see haematoma
driving 137 blindness 49
anxiety botulinum toxin 47
family members 108 bowel problems 53–4
relative with head injury 88, 91 boxing 136
173
brain clinical neuropsychologists 25

damage, mechanisms of 13–16 acute phase 31
functions 9–10 clonus 44
parts 10–12 closed head injury 14
Brain and Spinal Injury Centre (BASIC) 147 clumsiness (apraxia) 45, 66, 74, 75
Brain and Spine Foundation 147 CNS (central nervous system) 11
brain death 21 cognitive changes 57–8
Brain Injury Rehabilitation Trust 147 agnosia (difficulties in recognition) 66
brain plasticity 22, 39 apraxia 66
brainstem 10, 11, 19 attention 62–3
compression 15 communication problems 76–9
British Association for Counselling and coping with 66–7
Psychotherapy 148 emotional and behavioural changes
British Association for Sexual and 85–6, 90
Relationship Therapy (BASRT) 100 executive abilities 63–5
British Epilepsy Association 147 family issues 105
British Psychological Society 148 children 122
burnout, preventing 145 helping your relative 67–9
leisure activities 135
capacity to make decisions, lack of 140–3 looking after yourself 69–70
care managers/social workers 26 memory abilities 59–61
discharge home 36 overview of common problems 58
care package 36 resources 147–8
carers, professional 36 severity of head injury 58–9
Carers Centres 114 sexual problems 98
Carers UK 147 speed of thinking 61–2
catheters 54 visual neglect 66
sexual issues 97–8 visual perception 65
causes of head injury 13 visuospatial skills 66
central nervous system (CNS) 11 coma 16–17
cerebellum 10, 11 artificial see sedation
ataxia 45 children with head injured relatives 129
cerebrospinal fluid (CSF) 10 recovery rate 40
hydrocephalus 16 communication changes see speech,
skull fracture 16 language, and communication changes
cerebrum 10–11 communication charts and books 78
children and young people with head injured communication devices 78–9
relatives 119, 121–2 community rehabilitation teams 37
cognitive changes 63, 70 compensation claims 139–40
effects of head injury in the complex focal seizures (complex partial
family 122–4 seizures) 52
guilty feelings 107 computed tomography (CT) scans
longer-term adjustment 143, 144, 145 acute care 28, 29
positive outcomes 129–30 post-discharge headache/sleepiness 37
resources for 124–7, 153–64 concentration problems 62–3
supporting 124–9, 149–50 Connect 148
Children’s Brain Injury Trust (CBIT) 149 consciousness, reduced level of 16–19
chiropractors 55 A&E department, assessment in the 28
Citizen’s Advice Bureau 36, 138, 147 ambulance crew, assessment by the 28
classification of head injury severity 18 severity of head injury 18, 39
174
Index
see also coma; low-awareness states; driving 131–2, 136–8

unconsciousness; vegetative state attentional problems 62
constraint-induced movement therapy 47 and epileptic seizures 53, 136, 137
consultants in neurorehabilitation 25, 27 executive functioning problems 65
contact sports 136 thinking speed 62
continence problems 53–4 Driving and Vehicle Licensing Agency
contractures 44–5 (DVLA) 137–8, 150
contrecoup injury 14 drooling 48
contusion 14 dysarthria 74–6
cortex 11 dyspraxia/apraxia 45, 66, 74, 75
counsellors 25
see also psychological therapies and early symptoms after head
counselling injury 16–19
Court of Protection 142–3, 150 EEG (electroencephalogram) 53
Criminal Injuries Compensation Authority egocentricity 89
(CICA) 139, 150 electroencephalogram (EEG) 53
crushing injury 14 emotional changes 83
CSF see cerebrospinal fluid anger and irritability 87
CT (computed tomography) scans anxiety and fear 88
acute care 28, 29 causes 84–6
post-discharge headache/sleepiness 37 coping with 90–2
depression 86–7
deceleration injuries 14 emotional lability 87
dendrites 11 emotional numbness 88
denial 65 family problems 119
by families 107–8 impact on cognition 90
Department of Work and Pensions 138 looking after yourself 92–3
depression overview of common problems 83–4
family members 110 post-traumatic stress disorder 88
relative with head injury resources 148
86–7, 91–2 emotional lability (emotionalism) 87
fatigue 51 emotional numbness
desire, loss of 97 family members 106–7
Dialability 115, 135, 136 relative with head injury 88
dieticians 25 encephalitis 16
diffuse axonal injury 14–15 Enduring Power of Attorney (EPA) 142
consciousness, reduced level of 16 epileptic seizures 30, 51–2
fatigue 51 alcohol 55
longer-term effects 19 and driving 53, 136, 137
thinking skills, changes in 58 leisure activities 136
disability employment advisors (DEAs) executive functioning, changes in 63–5
25, 133 expressive difficulties 75, 78
disinhibition 64, 89 extradural (subdural) haematoma
distractedness 62–3 15, 16, 37
dizziness 50–1
doctors see consultants in family issues 103–4, 117
neurorehabilitation; general adjusting to role and relationship
practitioners changes 114–15
dossett boxes 68 children see children and young people
double vision 50 with head injured relatives
175
family issues (Cont.) frustration, family 109

coping with changes in your relative functional electrical stimulation (FES) 47
113–14
emotional reactions, understanding and gait disturbances 45
managing 105–13 GCS see Glasgow Coma Scale
fatigue 51 general practitioners (GPs) 25
longer-term adjustment 143–6 Glasgow Coma Scale (GCS) 17, 18, 19
making sense of head injury and hospital assessment 18, 28, 39, 58
systems 104–5 GPs see general practitioners
parents of injured adult children 118 grand mal (tonic–clonic) seizures 52, 53
practical problems 115 ‘grey matter’ 11
spouses’ issues 117–18 grief, family 111
supporting other family members and guilt, family 107
friends 116–17 children and young people 125, 126,
work, return to 134 154, 160
see also looking after yourself
haematoma (bleeding) 15-16, 30, 37, 39, 51
family support groups 112–13 Headway
family therapy 115 booklets 147, 148, 150
fatigue 51 contact details 147, 150
emotional and behavioural changes 86 family support 104,
work, return to 134 112, 113, 115
fear 88 financial issues 36, 138
FEES (fibre-optic endoscopic evaluation of knowledge about head injury,
swallowing) 48 legal issues 139, 143
FES (functional electrical stimulation) 47 leisure activities 135
fibre-optic endoscopic evaluation of looking after yourself 145
swallowing (FEES) 48 neuro-rehabilitation input 37
financial issues 138 rehabilitation services 35, 47
care package 36 resources, awareness of 5, 38
compensation claims 139 socializing 100, 101
family problems 115 specialist rehabilitation services,
residential care 38 availability of 35
work, return to 132 staff 25
first injury 14–15 transition home 36
flexion 44 work, return to 133
flying 136 health care professionals 23–7
frontal lobes 11, 12, 19 hearing disturbance 50
cognitive changes 58 hemianopia 49, 50
attentional problems 62 hemineglect 59–60
executive functioning 63, 65 hemiparesis 44
memory abilities 60 hemiplegia 44
effects of damage 19 hemispheres, brain 10–11, 12
emotional and behavioural left 10, 73
changes 84–5 right 10–11, 73–4
disinhibition 89 hobbies 134–6
egocentrism 89 holidays 136
impulsive behaviour 89 home
passivity 90 assessment (access visit) 36
vulnerability to damage 19 discharge 32, 34, 35–7
176
Index
children with head injured relatives 129 intravenous infusions 29

with further neuro-rehabilitation inversion, foot 44
input 37 irritability 36–7, 87, 93
without further neuro-rehabilitation IV infusions 29
input 37–8
hospital knowledge about head injury, increasing
acute care 28–32 your 4–5
children with head injured relatives 128 family issues 104–5
discharge from 32
family information 104 lability, emotional (emotionalism) 87
getting to 27 lack of capacity to make decisions 140–3
post-acute care 32–5 language changes see speech, language, and
hydrocephalus 16 communication changes
hydrotherapy 46 Lasting Powers of Attorney (LPAs) 142
hypothalamus 10 learning
problems 60
ICF (International Classification of supporting 69
Functions, Disability, and Health) 33 speech and language 73
ICP (intracranial pressure) 15 legal issues
monitors 29 capacity, lack of 140–3
ICU (intensive care unit) 30–1 compensation claims 139–40
IMCA (Independent Mental Capacity obtaining legal representation 138–9
Advocate) service 142, 150 resources 150
immediate treatment 27 leisure activities 134–6
immobility, complications associated with 31 Leonard Cheshire UK 147
impulsivity 64, 89 life support system, turning off the 21
incontinence 53–4 lightwriters 79
emotional and behavioural problems 86 limbic system 12
Independent Mental Capacity Advocate emotional and behavioural changes 84
(IMCA) service 142, 150 parietal lobes; temporal lobes
information location of injury, and prognosis 39–40
for children and young people longer-term adjustments 131–2, 146
124–7, 153–64 children with head injured relatives 129
knowledge about head injury, increasing driving 136–8
your 4–5 family issues 143–6
family issues 104–5 finances 138
information processing speed, legal issues 138–43
changes in 61–2 leisure activities 134–6
initiation, reduced 64 work, return to 132–4
insurance issues longer-term symptoms seen after head
driving 137 injury 19–20
sports 136 long-term care 38
travel 136 see also specialist rehabilitation services
intensive care unit (ICU) 30–1 looking after yourself 7, 145
interim payments, compensation claims 139 and children 128
International Classification of Functions, cognitive changes 69–70
Disability, and Health (ICF) 33 communication changes 79–80
Internet newsgroups 113 emotional and behavioural changes
intracerebral haematoma 15 35, 92–3
intracranial pressure (ICP) 15 vegetative state 35
177
low-awareness states 21–2 speech, language, and communication

communication problems 76–7 changes 75
specialist rehabilitation services 34–5 work, return to 132
see also coma; consciousness, reduced level MIND 148
of; unconsciousness; vegetative state minimally responsive state 21, 22
specialist rehabilitation services 34–5
Magnetic Resonance Imaging (MRI) 28 moderate head injury
massage 55 acute phase 29–32
mechanisms of head injury 13–16 aphasia 75
medical professionals 23–7 classification 18
medical teams 27 cognitive changes 59, 67
medication prognosis 20, 40
baclofen 47 speech, language, and communication
carbamazepine 53 changes 75
depressed family members 110 work, return to 132
dizziness 51 motor cortex 11
dossett boxes 68 Motor Insurance Bureau 150
emotional and behavioural problems motor/movement problems 43
87, 91, 92 apraxia 45
emotional lability 87 ataxia 45
epileptic seizures 30, 52, 53, 137 contractures 44–5
familiarizing yourself with 30 muscle weakness 43–4
gabapentin 47 spasticity 44
incontinence 54 supporting your relative 47
lamotrigine 53 treatments 45–7
midazolam 53 MRI (Magnetic Resonance Imaging) 28
motor problems 47 multi-tasking 63
oxybutynin 54 muscle weakness (paresis) 43–4
pain and headache 51
paracetemol 51 nasogastric tubes 30, 48–9
phenytoin 30, 52, 53 National Service Framework for Long-term
prochlorperazine 51 Conditions 147, 151
sexual problems 96, 100 National Society for the Prevention of
tizanidine 47 Cruelty to Children (NSPCC) 130
viagra 96 neck pain 51
medico-legal assessment process 140 neglect, visual 66
memory abilities, changes in 59–61, 70, 71 nerve cells 11
coping with 67–9 nerve pathways throughout brain 19
meningitis 16 neurologists 25
Mental Capacity Act 2005 141, 142, neurons 11
143, 150 neuropsychologists see clinical
mentors 133 neuropsychologists
migraine 51 neuro-rehabilitation centre, transfer to a 32–4
mild dysarthria 76 see also rehabilitation
mild head injury neurosurgeons 26, 29
acute phase 28–9 numbness, emotional
aphasia 75 family members 106–7
classification 18 relative with head injury 88
cognitive changes 59 nursing homes 38
prognosis 20, 40 see also specialist rehabilitation services
178
Index
nystagmus 50 persistent vegetative state 22

specialist rehabilitation services 34–5
occipital lobes 11, 12, 19 personal growth, positive 111
effects of damage 19 personality, changes in 63, 64
visual perception 65 see also behavioural changes; cognitive
visuospatial skills 66 changes; emotional changes
vulnerability to damage 19 phases of head injury 14–16
occupational therapists (OTs) 26 phobias 88
access visits 36 physical functioning, changes in 43
acute phase 31 bladder and bowel problems 53–4
home assessment 36 dizziness and balance problems 50–1
leisure activities 135 epileptic seizures 52–3
physical problems 54 fatigue 51
wheelchairs 46 hearing disturbance 50
work, return to 133, 134 impact 54
oedema (swelling of the brain) 15 motor/movement problems 43–7
recovery mechanisms 39 pain and headache 51
Office of the Public Guardian (OPG) sensory problems 49
142, 150 smell, loss of 50
open head injury see penetrating (open) supporting your relative 53
head injury swallowing problems 48–9, 55
open ward, transfer to 30–1 visual deficits 49–50
organizational difficulties 64 physical violence 35
orgasm, difficulties with 96, 97 physiotherapists (PTs) 26
orthopaedic rehabilitation services 35 access visit 36
orthopaedic surgeons 26 acute phase 31
orthoptists 26 balance retraining exercises 51
OT see occupational therapists home assessment 36
outdoor activities 134, 136 motor problems 45–6, 47
outpatient rehabilitation 37 neck pain 51
physical problems 45–6, 47, 51, 54
pain 51 vegetative state 35
emotional and behavioural problems 86 planning difficulties 64
during intercourse 97 plasticity, brain 22, 39
pain killers 51 plateauing of recovery rate 40
paramedics 26 positive personal growth 111
paresis (muscle weakness) 43–4 post-concussion syndrome 20
sexual problems 97, 98 post-traumatic amnesia (PTA)
parietal lobes 11, 12, 19 18, 31, 60
effects of damage 19 severity of head injury 18, 39, 58
visual perception 65 speed of recovery from 19
visuospatial skills 66 post-traumatic epilepsy 52–3
vulnerability to damage 19 post-traumatic stress disorder (PTSD) 88
partners’ issues 117–18 power of attorney 142
passive behaviour 64, 89–90 practical problems 115–16
penetrating (open) head injury 14 pressure sores, prevention of 35
epileptic seizures 30, 52 problem-solving difficulties 64
meningitis and encephalitis 16 professionals, health care 23–7
permanent vegetative state 22 prospective memory 60
perseveration 64 psychiatrists 26
179
psychological therapies and counselling motor problems 47

compensation claims 140 respite care 114, 144
emotional and behavioural problems retrieval of memories 60
91, 92 retrograde amnesia 61, 70
family problems 112, 115, 118 ‘rewiring’ the brain 39
headache 51 right hemisphere 10–11
leisure activities, inability to resume 135 communication skills 73–4
relationship problems 118 rotation injuries 14
sexual problems 99–100, 101 Royal College of Speech and Language
PT see physiotherapists Therapists 148
PTA see post-traumatic amnesia Ryder–Cheshire Association 135
PTSD (post-traumatic stress disorder) 88
pupils, reaction to light 28 SALTs see speech and language therapists
Samaritans 112, 148
quadriparesis 44 second injury 14, 15
sedation
radiologists 26 acute phase 29, 31
reading, difficulties in 75 post-traumatic amnesia 31
recognition, difficulties in (agnosia) 66 seizures see epileptic seizures
recovery 23, 38 self-help organizations 6, 37
cognitive functioning 67 self-neglect 89
frequently asked questions 41 sensory problems 49
journey/pathway 24 severe dysarthria 76
mechanisms 38–9 severe head injury
from muscle weakness 44 acute phase 29–32
plateau 40 aphasia 75
rate and degree 39–41 classification 18
see also prognosis; rehabilitation; treatment cognitive changes 59, 67
reduced initiation 64 prognosis 21–2, 40
reduced level of consciousness see speech, language, and communication
consciousness, reduced level of changes 75, 79
registrars, specialist (SpRs) 27 work, return to 132
rehabilitation 32–4 severity of head injury
after discharge home 37 classification 18
length of 41 cognitive problems 58–9
neuro-rehabilitation centre, transfer as predictor of recovery 39
to a 32–4 work, return to 132
principles of therapy 33 sexual aids 95–6, 97
specialist placements 34–6 sexual functioning, changes in 95, 118
speech and language therapy 77 causes 98–9
see also treatment coping with 99–100
rehabilitation nurses 26 men 95–8
rehabilitation services and professionals 6 overview 95
Rehab UK 133, 147 resources 148–9
Relate 100, 148 women 96–8
relationship problems 96–7 shock
religious beliefs 109 family members 106
residential care 38 relative with head injury 15
see also specialist rehabilitation services simple focal seizures (simple partial
resources 147–52 seizures) 52
awareness of 5–6 skull 10
180
Index
fracture 16 spouses’ issues 117–18

mechanisms of head injury 13 SpRs (specialist registrars) 27
sleepiness 37 Stroke Association 150
sleep problems 86 strokes 15
smell, loss of 50 subdural (extradural) haematoma
socializing first injury 15
family members 115 signs 37
single people with head injury 98, 100, 101 third injury 16
social services 147 support groups 112-13
care package 36 support services 3
children with head injured relatives 130 surgery
longer-term adjustment to head acute phase 29
injury 144 driving 136, 137
social workers/care managers 26 motor problems 47
discharge home 36 swallowing problems 48–9, 55
solicitors 27 swelling of the brain (oedema) 15
see also legal issues recovery mechanisms 39
spasms 44
spasticity 44 teenagers 123–4, 126–7
treatment 46, 47 information for 159–64
spatial difficulties 65–6 see also children and young people with
Speakability 148 head injured relatives
specialist rehabilitation services temporal lobes 11, 12, 19
availability 35–6 cognitive change 58
family support 112, 144 effects of damage 19
and prognosis 40 vulnerability to damage 19
transfer to 32, 34–5 tetraparesis 44
speech and language therapists (SALTs) thinking skills, changes in see cognitive
27, 80, 81 changes
acute phase 31, 77 third injury 14, 15–16
communication charts and books 78 tinnitus 50
communication devices 78 tonic–clonic (grand mal) seizures 52, 53
depression 87 total communication 77, 79
sexual problems 100 transport problems 115
swallowing problems 48, 55 trauma surgeons 27
speech, language, and communication travel 136
changes 73 treadmill training 46
aphasia 74, 75 treatment 23
cognitive problems 76–9 acute phase 27–32
depression 87 journey/pathway 24
dysarthria 74–6 post-acute phase 32–8
emotional problems 87, 90 who’s who? 23–7
looking after yourself 79–80 see also recovery; rehabilitation
overview of common difficulties 73–4 tremor 45
resources 148
sexual problems 98–9, 100 unconsciousness 16–17, 18
verbal dyspraxia 75 severity of head injury 18, 39
spinal injury rehabilitation services 35 see also coma; consciousness, reduced level
splints 46 of; low-awareness states; vegetative state
sports 134, 136 understanding, difficulties in 75, 77–8
181
vegetative state 21–2 ‘white matter’ 11

specialist rehabilitation services 34–5 WHO (World Health Organization) 33
see also low-awareness states who’s who in head injury treatment and
ventilation 29 care? 23–7
ventricles 10 work, return to 131–2
vestibular system 50, 51 coping strategies 133–4
videofluoroscopy 48 difficulties 132
violence 35 planning 132–3
vision, loss of 49 unsuccessful 134
visual agnosia 66 World Health Organization (WHO) 33
visual deficits 49–50 writing difficulties 75
headache 51 written information, obtaining 5, 106
visual neglect 66
visual perception, changes in 65 X-rays 28
visuospatial skills, changes in 66
vital signs 28 young carer role 122
vocational rehabilitation services 37 young people see children and young people
with head injured relatives
walking aids 46
wheelchairs 46
leisure activities 134
182

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thefacts

Epilepsy: thefacts Lupus: thefacts

Appleton and Marson Isenberg and Manzi

Osteoarthritis: thefacts Ankylosing spondylitis: thefacts

Asthma: thefacts Borderline personality disorder: thefacts

the death or serious illness of a loved one, the breakdown of a relationship,

Coping with head injury

What helps in coping with head injury?

1. Become knowledgeable about head injury by seeking information and

Increasing your knowledge about head injury

Become aware of what resources are available

Use strategies to overcome problems and ﬁnd ways around your

Finding ways round ongoing difﬁculties (sometimes called compensation

Looking after yourself

Parts of the brain

Figure 2.1 The brain

What happens in a head injury?

Causes of head injury

How does the brain become damaged

Early clinical symptoms after head injury

The level of consciousness is a good indicator of how severe your relative’s

Table 2.1 The Glasgow Coma Scale

Table 2.2 Severity of head injury according to GCS, length of unconsciousness,

Longer-term symptoms seen after head injury

Table 2.3 Longer-term difﬁculties after head injuries

Prognosis: what will the outcome be?

Prognosis in mild head injury

Prognosis in moderate head injury

Prognosis after severe head injury

Because of this, various standardized observations have been produced to

Who’s who in head injury treatment and care?

Head injury · thefacts

Home (with or Home (with

Figure 3.1 Overview of the journey/pathway

role in managing your relative’s early treatment and rehabilitation, throughout

Table 3.1 Who’s who in head injury care?

Table 3.1 Who’s who in head injury care? (continued)

Table 3.1 Who’s who in head injury care? (continued)

The acute phase

Management at the site of the accident

the injured person’s ABC (airway, breathing, circulation). Ambulance crews

Ongoing hospital treatment

Management of patients with mild head injury

complaints such as headache, dizziness, and sleepiness improve within days or

Management of patients with moderate or severe head injury

attached to and how it is helping him/her. A North American website (www.wait-

Treatment in the ICU

Treatment in the ICU has several functions

Transfer from the ICU to the open ward

Common problems and complications at this stage of recovery

Focus of care at this stage

The post-acute phase

Transfer to a neuro-rehabilitation centre

To help us understand the impact of an illness or injury on a person, the World

Table 3.2 The WHO Classiﬁcation of Functioning, Disability, and Health

Basic principles of therapy used in rehabilitation

The different members of the rehabilitation team work together on different

Transfer to specialist placements

Availability of specialist rehabilitation services