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Literature Reviews

Caregiver burden for informal caregivers of

patients with dementia: A systematic review
C.-Y. Chiao1 RN, PhD, H.-S. Wu2 RN, PhD & C.-Y. Hsiao3 RN, PhD
1 Assistant Professor, 3 Associate Professor, School of Nursing, Chung Shan Medical University, Chung Shan Medical
University Hospital, 2 Associate Professor, School of Nursing, Asia University, Taichung City, Taiwan

CHIAO C.-Y., WU H.-S. & HSIAO C.-Y. (2015) Caregiver burden for informal caregivers of patients
with dementia: A systematic review. International Nursing Review 62, 340–350

Background: Dementia is an irreversible illness. The caregiver is expected to assume increased responsibility
as the condition of the person with dementia declines. It is important to explore the factors constituting
caregiver burden on the informal caregivers of people with dementia.
Aims: The purpose of this article is to identify the factors constituting caregiver burden on the informal
caregivers of people with dementia living in the community.
Methods: A systematic review of the four databases, including PubMed, PsycINFO, CINAHL and the
Cochrane Library, was carried out to access relevant articles published between 2003 and 2012. Twenty-one
articles met the inclusion criteria of this study.
Results: Behavioural problems or psychological symptoms were the primary factor of the person with
dementia that is associated with caregiver burden. Caregiver socio-demographical factors and psychological
factors were the two primary factors of the caregiver burden.
Limitations: Several results of this study were based on studies that had their own limitations. Furthermore,
the concept of caregiver ‘burden’ was not clearly defined in some of the studies; instead, the term was broadly
defined.
Conclusion: Factors of caregiver burden in regard to people with dementia living in the community were
clarified in this review study. By identifying all of the factors, healthcare professionals can deliver appropriate
assistance to relieve caregiver burden and improve the quality of caregiving for people with dementia.
Implications for Nursing and Health Policy: It is important to identify the factors of the burden on the
caregivers of people with dementia living in the community to prevent early nursing home placement,
deterioration of caregiver’s health and reduce the adverse health outcomes for care recipients. A health-related
policy should be formulated to help informal caregivers receive more professional assistance. Training
opportunities should be provided for family caregivers to reduce the impact of caregiving on the delivery of
effective care.

Keywords: Caregiver Burden, Caregiving, Dementia, Informal Caregiver, Systematic Review

Correspondence address: Chiu-Yueh Hsiao, School of Nursing, Chung Shan Medical University, Chung Shan Medical University Hospital, No.110, Sec. 1, Jianguo N. Road,
Taichung City 40201, Taiwan; Tel: 886-4-24730022 #12318; Fax: 886-4-23248173; E-mail: chsiao@csmu.edu.tw.

Conflict of interest statement

The authors declare that they have no conflict of interests.

© 2015 International Council of Nurses 340

Caregiver burden for informal caregivers 341

Introduction behavioural disturbances in the patient. In contrast, the

caregiver-related factors for the caregiver burden associated
Background with dementia are gender, cultural values, the relationship with
With life expectancy increasing worldwide, the ageing popula- the person with dementia, the amount of informal and formal
tion will increase (Chan 2010). Consequently, caring for this care available and the caregiver’s physical and mental status,
population will be a challenging issue because of the high personality and coping strategies (Etters et al. 2008; Torti et al.
demand and heavy load of gerontological caregiving (Etters 2004).
et al. 2008). This challenge will affect not only the families of Informal caregivers are non-professional people (such as a
the older people but also their healthcare professionals. Demen- family member, friend or paid caregiver) who provide care in a
tia is one of the most challenging age-related illnesses for car- home setting for another person and who usually deliver care to
egivers and healthcare professionals (Huang et al. 2012). people with disabilities and people with dementia (Etters et al.
According to the World Alzheimer Report (2012), there were 2008). These caregivers provide most of the assistance and
appropriately 36 million people suffering from dementia world- supervision that are necessary to fulfill the basic needs of people
wide and that number is expected to increase to 66 million by with dementia living in the community (Etters et al. 2008).
2030 and to 115 million by 2050. Because informal caregivers tend to lack professional knowledge
Dementia is a progressive illness (Donaldson et al. 1997). and have limited care-related training to perform the activities
Both formal and informal caregivers are expected to assume needed to meet the needs of people with dementia, it is likely
increased responsibility as the patient with dementia deterio- that they will experience a greater care-induced burden such as
rates. Associated with the increasing lifespan across commu- depressive symptoms (Huang et al. 2009). Although some posi-
nities, caregivers will over time be confronted by increases in tive effects of dementia caregiving have been identified (Lim
dementia-related symptoms and extended disease progression. et al. 2011), most studies have reported adverse outcomes from
The projected increase in the duration of lifespan and the asso- this type of caregiving.
ciated progressive deterioration of persons with dementia will
lead to increased stress and burden on both formal and infor-
Aim
mal caregivers. The term ‘caregiver burden’ is most often used to
Over the past few years, several meta-analysis and review arti-
describe this phenomenon. Zarit et al. (1986) defined caregiver
cles have evaluated the effectiveness of interventions that
burden as ‘the degree to which a carer’s emotional or physical
support caregivers for people with dementia (Brodaty et al.
health, social life or financial status had suffered as a result of
2003; Etters et al. 2008; Parker et al. 2008; Schoenmakers et al.
caring for their relative’ (p. 261). In this systematic review
2010; Thompson et al. 2007). In addition, one systematic review
article, caregiver burden referred to ‘a high level of physical,
clarified the determinant models of subjective caregiver burden
psychological, emotional, behavioural and financial burden that
in dementia patients (van der Lee et al. 2014) and another sys-
may be experienced by informal caregivers who are caring for
tematic review identified the caregiving stressors among profes-
people with dementia’. Several studies have explored the car-
sional caregivers (Pitfield et al. 2011). However, few systematic
egiver burden of formal and informal caregivers who provide
have defined the caregiver burden on informal caregivers of
care to people with dementia. For example, Bertand et al. (2006)
people with dementia. Recognized risk factors of caregiver
proposed that the informal caregivers of older persons with
burden by distinguishing patient and caregiver characteristics
dementia experienced higher levels of burden and depression
associated with caregiver burden have not yet been systemati-
than those caring for older persons without dementia.
cally analysed. Therefore, the aim of the review article is to iden-
The concept of caregiver burden is complicated and multidi-
tify the main factors of caregiver burden among the informal
mensional. Dang et al. (2008) proposed that caregiver burden
caregivers of people with dementia living in the community.
involves the overall physical, psychological, emotional and
financial toll of providing care. Several studies have discussed
the caregiver burden associated with dementia from different Methods
perspectives. Two main dimensions were identified: the charac-
teristics of the patient and the characteristics of the caregiver. Inclusion criteria
Literature review articles have summarized the specific patient-
related factors for the caregiver burden associated with demen- Types of studies
tia as the patients’ type of dementia, extent of personality Types of studies included in this review article were systematic
change, as well as the presence of psychiatric symptoms and reviews, meta-analyses, qualitative studies, cross-sectional

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342 C.-Y. Chiao et al.

studies, cohort studies, correlational studies, longitudinal study, reviewer for relevance to the review based on the title and
case control studies and observational studies. abstract. Next, quality assessments were conducted by the other
two independent reviewers. A total of 17 articles were identified.
Types of participants Furthermore, four additional articles met the inclusion criteria
The systematic review article included informal caregivers who when searching the references of the 17 articles. As a result, 21
provided care for people with dementia living in the commu- articles met the inclusion criteria of this study. The articles were
nity. Informal caregivers were defined as non-professional indi- summarized and compared based on the research design, the
viduals who provided most of the assistance and supervision to sample size, the type of dementia, the caregiver’s relationship
fulfill the basic needs for people with any type of dementia. The with the patient, the living arrangement, the caregiver burden
relationships between caregivers and dementia patients could be measure and the factor(s) investigated (patient characteristics
biological, by marriage or by choice. The types of dementia and caregiver characteristics).
included Alzheimer’s disease, vascular dementia, dementia with
Lewy bodies, frontotemporal dementia, Creutzfeldt-Jakob Quality appraisal
disease and Korsakoff’s syndrome. Quality assessments were performed using the ‘Joanna Briggs
Institute Critical Appraisal Checklists’ that were designed at the
Types of outcomes Joanna Briggs Institute (Joanna Briggs Institute 2011). The
The primary outcome of the systematic review was caregiver checklists include 7–11 questions, depending on the types of
burden among informal caregivers. The secondary outcomes of study design. A sample question from the appraisal tools for
this review included stress or strain among informal caregivers. descriptive studies was ‘Were the criteria for inclusion in the
sample clearly defined?’ The choices of answers were ‘yes’, ‘no’,
Exclusion criteria ‘unclear’ or ‘not applicable’. The overall appraisal of ‘include’,
The exclusion criteria included articles which (a) were interven- ‘exclude’ or ‘seek further information’ were presented in the last
tion studies, (b) were institution-based research, (c) provided section of the checklist. Two reviewers were assigned to assess
informal care for people with a memory problem rather than the selected articles independently. They were also asked to
dementia, and (d) were professional caregivers. Articles were make the final appraisals. Articles were included or excluded
excluded if caregiver burden was not clearly define or was meas- from this study based on agreement between the two reviewers.
ured by different domains of instruments rather than caregiver When the appraisal of one of the reviewers was ‘seek further
burden. information’, they had a discussion to determine whether the
article would be included.
Search methods
Four data bases widely used in the health sciences, including Analysis
PubMed, PsycINFO, the Cochrane Library and CINAHL, were The outcomes of the selected articles were grouped as patient
searched to access relevant articles. The articles selected were and caregiver characteristics. The outcomes on each group were
published from 2003 to 2012 since the review study performed then sorted into three thematic categories based on their
by Parker et al. (2008) was published covering an earlier period common characteristics. Next, the frequency of studies within
of time. A comprehensive search was performed using the fol- each thematic category of characteristics was identified.
lowing MeSH terms: ‘caregiver’, ‘burden’ and ‘dementia’ and the
following thesaurus terms: ‘dementia’, ‘caregivers’, ‘informal’, Results
‘family members’ and ‘burdens’ in different combinations. The
limits were set for ‘humans’ and ‘English’. The articles were care- An overview of the general results
fully examined and the full articles that met the inclusion cri- A comprehensive search was made and the resultant 1058 arti-
teria, based on their title and abstract, were retrieved from the cles were assessed for their relevance to this review. Among
database. these, 997 articles were excluded from the screening process of
title/abstracts reviewed and 61 full-text articles were chosen for
Search outcome quality assessment by two reviewers. A total of 17 articles
Figure 1 shows the process of selecting the articles for review. achieved the standards of the quality assessment. Four addi-
One thousand one hundred four articles were identified by tional articles that were identified by searching the references of
database searches. Forty-six duplicate articles were removed. the 17 articles met the inclusion criteria and achieved the stand-
The rest of 1058 articles were then assessed by the primary ards of quality assessment. As a result, a total of 21 studies were

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Caregiver burden for informal caregivers 343

Literature database search:

PubMed: 320, PsycINFO: 526, Cochran Library database: 0, MEDLINE: 244, CINAHL: 14

46 duplicate articles

997 articles excluded:

Caregiver burden is not the outcome variable: 318;
Intervention studies: 197; Review articles: 130;
1058 titles/abstracts reviewed
Evaluation tools: 57; Institutionalization: 67;
(reviewer: C-YC )
Patient with other disorders: 71;
Pharmacological treatment: 93; Financial issues (costs): 18;
Formal caregiver: 23; Neuropathology/physiology: 20

44 articles excluded:
Statistical analysis was not clearly stated: 8
61 full-text articles screened
Methodology was not reliable: 15
(reviewers: C-YH, H-SW)
Research design was not comprehensive: 10
Inclusion criteria were not clearly defined: 11

A total of 17 articles met the inclusion criteria of the literature review.

Four additional articles met the inclusion criteria when searching the references of the 17
articles.

21 studies were included for systematic review in this article.

Fig. 1 Process of selecting articles for review.

included for this systematic review. All of these studies met the cross-sectional longitudinal study design and one study was a
level II evidence criterion of ‘evidence from a single quantitative retrospective records review. The data related to patient/
descriptive or qualitative study’ based on Fineout-Overholt caregiver dyads were collected from 12 of the 21 studies. The
et al.’s (2005) proposed model of ‘levels of evidence for answer- main family caregivers were children or other relatives in nine
ing clinical questions about meaning’. of the studies and spouses in eight of the studies. The
Table 1 presents the summary of the included studies. Among co-residing rates of the informal family caregivers and the
the 21 studies, 16 studies had a cross-sectional study design, dementia patients ranged from 57% to 100%. In addition,
three studies had a longitudinal study design, one study had a among the 21 studies, ten studies used the English version of

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 344
Table 1 The summary of included studies

Author(s) (Year) Design Sample size Dementia type Relationship with the Living arrangement Caregiver burden
patient measures

McConaghy & Caltabiano Cross-sectional survey 42 carers Dementia Spouses (54.7%) Co-residing (81%) ZBI
(2005) study Children (35.8%)
C.-Y. Chiao et al.

Other relatives (9.5%)

Rinaldi et al. (2005) Cross-sectional study 419 AD Spouses (37%) Co-residing (78%) CBI

© 2015 International Council of Nurses

patient/caregiver dyads Vascular dementia Children (46%)
Other relatives (17%)
Heru & Ryan (2006) 1-year, longitudinal study 38 caregivers AD Spouses (61%) VAS-Burden
Children (29%)
Other relatives (10%)
Sink et al. (2006) cross-sectional study 5788 AD Spouses (49.2%) Co-residing (77.8%) ZBI
patient/ vascular dementia Children (39.4%)
caregiver dyads mixed Other relatives (11.4%)
Andrén & Elmståhl Cross-sectional study 50 family caregivers AD Spouses (6%) CB scale
(2007) vascular dementia Children (60%)
mixed forms Other relatives (34%)
Davis & Tremont (2007) Cross-sectional study 72 family caregivers Mild-to-moderate AD Spouses (61.1%) Co-residing (100%) ZBI
Boutoleau-Bretonnière Cross-sectional study 26 FTD patient/caregiver FTD ZBI
et al. (2008) dyads AD
28 AD patient/caregiver
dyads
Hong & Kim (2008) Predictive correlational 157 patient/family Dementia Spouses (26.8%) KBI
design with a caregiver dyads Daughters (26.1%)
cross-sectional survey Sons (13.4%)
Daughters-in-law
(33.8%)
Tun et al. (2008) Cross-sectional survey 122 patient/informant AD Spouses (60%) Screen for caregiver
dyads Daughters (30%) burden
Other relatives (7%)
Friends (3%)
Froelich et al. (2009) 2-year, international, 1382 patient/caregiver Mild-to-moderate AD ZBI
longitudinal and dyads
observational cohort
survey
Kim et al. (2009) Cross-sectional study 609 patient/caregiver AD Spouses (40.9%) Co-residing (88.2%) Korean version of CBI
dyads Son & daughter-in-law
(45%)
Daughter and son-in-law
(12.5%)
 Skarupski et al. (2009) Longitudinal study 233 white family AD Spouses (44.3%) Co-residing (76.2%) Burden
caregiver/patient dyads Children (54.4%)
74 black family

© 2015 International Council of Nurses

caregiver/patient dyads
Agüera-Ortiz et al. (2010) Cross-sectional and 857 patient/caregiver Moderate-to-severe AD Spouses (41%) Co-residing (88%) Spanish version of ZBI
prospective dyads Descendants (49%)
observational study
Caregiver burden for informal caregivers

Conde-Sala et al. (2010) Cross-sectional analytic 251 patient/caregiver Mild-to-moderate AD Adult children (55.5%) Co-residing (66.5%) Spanish version of ZBI
study dyads Spouses (44.5%)
Mohamed et al. (2010) Cross-sectional 421 caregivers Alzheimer type Spouses (52%) ZBI
Longitudinal study Children (33%)
Sinforiani et al. (2010) Cross-sectional study 218 informal caregivers Mild-to-moderate AD Spouses (49%) Co-residing (57%) CBI
Children (38%) NPIDS
Other relatives (13%)
Sun et al. (2010) Cross-sectional study 67 African–American Dementia Spouses (10.8%) in CCI
family caregiver African–American
74 non-Hispanic White group
family caregiver spouses (9%) in
non-Hispanic White
group
Yeager et al. (2010) Retrospective records 784 patient/caregiver AD Adult children (50.8%) ZBI
review dyads vascular dementia Spouses (35.2%)
Extended family (7.5%)
Gallagher et al. (2011) Cross-sectional study 84 patient/caregiver Alzheimer type Spouses (64%) ZBI
dyads
Lim et al. (2011) Cross-sectional study 107 family caregivers Dementia Spouses (9%) Co-residing (65%) ZBI
Children (81%)
Other relatives (10%)
Zawadzki et al. (2011) Cross-sectional study 51 family caregivers Alzheimer type Spouses (76.5%) Co-residing (68.6%) ZBI
Children (17.6%)

AD, Alzheimer’s disease; CB, caregiver burden; CBI, Caregiver Burden Inventory; CCI, Consequences of Care Index; FTD, frontotemporal dementia; KBI, Korean Burden Inventory; NPIDS,
Neuropsychiatric Inventory Caregiver Distress Scale; VAS-Burden: Visual Analogue Scale-Burden; ZBI: Zarit Burden Inventory.
345
346 C.-Y. Chiao et al.

Table 2 The summary of risk factors for caregiver burden grouped by patient and caregiver characteristics

Characteristics Authors

Patient characteristics
Behavioural or psychological factors
Functional status Gallagher et al. 2011; Kim et al. 2009; Rinaldi et al. 2005; Sink et al. 2006; Yeager et al. 2010
Prevalence of behavioural disturbances Boutoleau-Bretonnière et al. 2008; Conde-Sala et al. 2010; Davis & Tremont 2007; Lim et al.
2011; Mohamed et al. 2010; Rinaldi et al. 2005; Sink et al. 2006
Levels of neuropsychiatric symptoms Conde-Sala et al. 2010; Gallagher et al. 2011; Mohamed et al. 2010; Sink et al. 2006; Tun et al.
2008; Yeager et al. 2010
Disease-related factors
Severity of the dementia Lim et al. 2011; Mohamed et al. 2010; Skarupski et al. 2009; Sink et al. 2006
Type of dementia Boutoleau-Bretonnière et al. 2008
Duration of the illness Kim et al. 2009
Patient socio-demographical factors
Levels of education Agüera-Ortiz et al. 2010; Kim et al. 2009
Caregiver characteristics
Caregiver socio-demographical factors
Monthly income Andrén & Elmståhl 2007; Kim et al. 2009
Gender Kim et al. 2009; Skarupski et al. 2009; Yeager et al. 2010
Educational level Kim et al. 2009; Sinforiani et al. 2010
Cohabitation with the patient Conde-Sala et al. 2010
Ethnicity Skarupski et al. 2009; Sun et al. 2010
Psychological factors
Psychological health Andrén & Elmståhl 2007; McConaghy & Caltabiano 2005
Perceived well-being McConaghy & Caltabiano 2005
Depressive symptoms Davis & Tremont 2007; Yeager et al. 2010
Religious coping skills Sun et al. 2010
Self-sufficiency for symptom management Gallagher et al. 2011
Anxiety Zawadzki et al. 2011
Aggressiveness Zawadzki et al. 2011
Authoritarianism Zawadzki et al. 2011
Caregiving-related factors
Patient care load Froelich et al. 2009; Kim et al. 2009; Skarupski et al. 2009
Family functioning Heru & Ryan 2006

Zarit Burden Inventory (ZBI) and two studies used the Spanish (Boutoleau-Bretonnière et al. 2008; Conde-Sala et al. 2010;
version of ZBI for the outcome measurement of caregiver Davis & Tremont 2007; Lim et al. 2011; Mohamed et al. 2010;
burden. Rinaldi et al. 2005; Sink et al. 2006) and levels of
Table 2 presents the summary of risk factors for caregiver neuropsychiatric symptoms (Conde-Sala et al. 2010; Gallagher
burden grouped by patient and caregiver characteristics. The et al. 2011; Mohamed et al. 2010; Sink et al. 2006; Tun et al.
detailed description is described as follows. 2008; Yeager et al. 2010), were the most frequently proposed
patient characteristics as factors of caregiver burden and this
Patient characteristics as factors of caregiver burden category was included in 11 of the 21 studies. Patients with
Patient characteristics were grouped into three categories, which dementia with a poor functional status, a high prevalence of
included behavioural or psychological factors, disease-related behavioural disturbances and a high level of neuropsychiatric
factors and patient socio-demographical factors. Behavioural or symptoms were associated with their primary family caregivers
psychological factors, including functional status (Gallagher experiencing a greater burden from their caregiving.
et al. 2011; Kim et al. 2009; Rinaldi et al. 2005; Sink et al. 2006; Disease-related factors, including severity of the dementia
Yeager et al. 2010), prevalence of behavioural disturbances (Lim et al. 2011; Mohamed et al. 2010; Sink et al. 2006;

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Caregiver burden for informal caregivers 347

Skarupski et al. 2009), type of dementia (Boutoleau-Bretonnière load and poor family functioning experienced a greater burden
et al. 2008) and duration of the illness (Kim et al. 2009), were from their caregiving.
included in six studies. Patients with dementia with worsening
severity of dementia, frontotemporal dementia and long dura-
tion of the illness were associated with their primary family car- Caregiver characteristics as two-way factors of caregiver burden
egivers experiencing a greater burden from their caregiving. The age of the caregiver and the relationship with the patient
In addition, levels of education among patients with demen- were found to be factors of caregiver burden in several situa-
tia (Agüera-Ortiz et al. 2010; Kim et al. 2009) were recognized tions. Two studies indicated that younger informal caregivers
as the patient socio-demographical factor of caregiver burden. (Andrén & Elmståhl 2007; Skarupski et al. 2009) experienced a
Patients with dementia with lower levels of education were cor- greater caregiver burden. However, Rinaldi et al. (2005) pro-
related to their primary family caregivers experiencing a greater posed that older informal caregivers experienced a greater car-
burden from their caregiving. egiver burden. Furthermore, two studies reported that spouse
caregivers (Hong & Kim 2008; Rinaldi et al. 2005) usually
experienced a greater caregiver burden, whereas three other
Caregiver characteristics as factors of caregiver burden studies identified adult children (Andrén & Elmståhl 2007;
Caregiver characteristics were grouped into three categories, Conde-Sala et al. 2010; Yeager et al. 2010) as the caregivers who
which included caregiver socio-demographical factors, psycho- experienced a greater caregiver burden.
logical factors and caregiving-related factors. Caregiver socio-
demographical factors, including monthly income (Andrén &
Elmståhl 2007; Kim et al. 2009), gender (Kim et al. 2009; Discussion
Skarupski et al. 2009; Yeager et al. 2010), educational level (Kim Caring for people with dementia is a stressful and difficult task,
et al. 2009; Sinforiani et al. 2010), cohabitation with the patient especially among informal caregivers. Informal caregivers caring
(Conde-Sala et al. 2010) and ethnicity (Skarupski et al. 2009; for individuals with dementia were confirmed to present higher
Sun et al. 2010), were one of the most frequently proposed car- levels of burden and depression than caregivers of persons with
egiver characteristics as factors of caregiver burden and this cat- stroke (Huang et al. 2009). Existing literatures revealed that the
egory was included in seven of the 21 studies. Caregivers with patients’ severity of dementia, behavioural disturbances, extent
low monthly income, female gender, low educational level, of personality change, as well as the presence of psychiatric
cohabitation with the patient and non-Hispanic Caucasian eth- symptoms were the main patient-related factors contributing to
nicity were associated with experiencing a greater burden from caregiver burden (Etters et al. 2008; Pinquart & Sörensen 2003;
their caregiving. Torti et al. 2004; van der Lee et al. 2014). The results of this sys-
Psychological factors, including psychological health (Andrén tematic review were consistent with previous findings. With
& Elmståhl 2007; McConaghy & Caltabiano 2005), perceived regard to patients’ characteristics, the primary factor of car-
well-being (McConaghy & Caltabiano 2005), depressive symp- egiver burden was behavioural problems or psychological
toms (Davis & Tremont 2007; Yeager et al. 2010), religious symptoms. Patients’ functional status, prevalence of behavioural
coping skills (Sun et al. 2010), self-sufficiency for symptom disturbances and levels of neuropsychiatric symptoms, such as
management (Gallagher et al. 2011), anxiety (Zawadzki et al. wandering and delusions, were most burdensome to informal
2011), aggressiveness (Zawadzki et al. 2011) and authoritarian- caregivers.
ism (Zawadzki et al. 2011), were the second one of the most fre- It is important to note that physical limitations of the patient
quently proposed caregiver characteristics as factors of caregiver was identified as a factor of caregiver burden in this review
burden and this category was included in seven of the 21 article, whereas previous review articles did not report patient’s
studies. Caregivers who had poor psychological health, poor degree of difficulty with activities of daily living as a factor of
perceived well-being, high depressive symptoms, poor religious caregiver burden (Etters et al. 2008; Torti et al. 2004). Further-
coping skills, poor self-sufficiency for symptom management, more, both Donaldson et al.’s review article from 1997 and
high anxiety, aggressiveness and authoritarianism experienced a Burns and Rabin’s article from 2000 reported that no significant
greater burden from their caregiving. relationship was found between the caregiver burden and the
In addition, caregiving-related factors, including patient care limitations to activities of daily living in the patients. In both of
load (Froelich et al. 2009; Kim et al. 2009; Skarupski et al. 2009) those articles, the terms ‘burden’, ‘caregiver strain’ and ‘stress’
and family functioning (Heru & Ryan 2006), were included in were classified as the same aspects of caregiver burden, whereas
four studies. Caregivers who had a relatively heavy patient care our study clearly and more specifically defined the term car-

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348 C.-Y. Chiao et al.

egiver ‘burden’ for this systematic review, which would account role responsibilities and to fulfill accumulative care demands.
for the difference between our study results and the results of Consequently, caregivers may experience increasing feelings of
those two studies. burden. Caregiving is a dynamic process. Understanding how
Furthermore, existing review literatures revealed that the caregiver burden changes over time is crucially important. To
caregiver-related factors for the caregiver burden associated our knowledge, only one study has characterized psychological
with dementia were gender, age, cultural values, the relationship patterns among family caregivers of care recipients with
with the person with dementia, duration of caregiving and the primary malignant brain tumours (Choi et al. 2012), but none
caregiver’s physical and mental status, personality and coping of the research has been conducted targeting on the caregivers
strategies (Burns & Rabins 2000; Etters et al. 2008; Torti et al. of the population of people with dementia. Further research
2004; van der Lee et al. 2014). From the caregiver’s perspective should be undertaken to identify caregiver burden patterns
identified through this review, caregiver socio-demographic throughout the course of caregiving in informal caregivers of
factors (monthly income, gender, educational level, cohabita- people with dementia.
tion with the patient and ethnicity) as well as psychological In addition, different results of caregiving outcomes in the
factors (psychological health, perceived well-being, depressive relationship with the patient as a factor of caregiver burden
symptoms, religious coping skills and anxiety) were the two were also verified. Spouse caregivers and adult children caregiv-
main factors of caregiver burden. In addition, female caregivers ers experience the greatest burden compared with other infor-
were observed to experience more caregiver burden than male mal caregivers of people of dementia. There are some possible
caregivers. The same results were also described by Pinquart & explanations for this finding. Nearly 100% of the spouse car-
Sörensen (2005), Etters et al. (2008) and Chan’s (2010) egivers in our study were cohabitating with the patient with
research. dementia, which might place a heavier patient care load on
Contrary results for burden related to the age of the caregiver them. Therefore, because a heavier patient care load and living
were identified. Some studies indicated that younger caregivers with the patient were found to be associated with caregiver
experienced great perception of burden; others found that older burden, spouse caregivers will logically suffer a heavier caregiver
caregivers experienced a greater sense of burden. Both results burden compared with other caregivers. Adult children caregiv-
are reasonable: older caregivers usually have poor physical and ers, especially Asian–American daughter-in-law caregivers
psychological health, whereas younger caregivers usually have (Pinquart & Sörensen 2005), are usually expected to assume the
less experience in caregiving or a feeling of social restrictiveness, caregiver role regardless of the quality of their relationship with
consistent with the factors of caregiver burden identified in our their in-law. Furthermore, poor family functioning (Heru &
study (Andrén & Elmståhl 2007; Kim et al. 2009; McConaghy & Ryan 2006) has been identified as a factor of caregiver burden in
Caltabiano 2005; Sinforiani et al. 2010; Zawadzki et al. 2011). this study. As a result, adult children caregivers may suffer high
Other review articles have also examined the effect of the car- levels of burden from caregiving. In sum, regardless of the rela-
egivers’ age on caregiver burden. Chan (2010) reviewed car- tionship between the caregiver and the patient, closer kinship
egiver burden from an Asian cultural perspective and found that ties are associated with increased caregiver burden (Etters et al.
middle-aged and older women who provided care for an ill or 2008).
disabled spouse in Asia usually experienced more caregiver
burden, which was consistent with the findings of Rinaldi et al. Conclusion
(2005) from an Italian point of view. Therefore, it is logical that This study has limitations. The concept of caregiver ‘burden’
caregiver burden could be influenced by cultural differences. was not clearly defined in some of the studies; instead, the term
Further review articles could be performed to compare culture was broadly defined. For example, some of the investigations
differences in caregiver burden. used the ZBI scale to measure the outcome variable of ‘strain’,
Another explanation for the contrary results of caregiver age ‘depression’ or ‘stress’. Because the definitions of those terms can
was that caregiver age may not be linearly associated with car- vary and differ from our concept of caregiver burden, it was dif-
egiver burden. They might present different patterns through- ficult to identify the key outcome variable in those studies
out the course of caregiving. For example, younger caregivers during our screening process.
may have less experience in caregiving, which results in heavier Despite its limitations, the present study systematically exam-
caregiver burden. As the care situation progresses, they could ined the literature on the principal factors of caregiver burden
adjust to the situation and learn more skills in caregiving. At among informal caregivers of people with dementia living in
this time point, they may experience less caregiver burden. the community. The results of this systematic review demon-
However, with caregiver age increasing, they need to take more strated that behavioural problems or psychological symptoms,

© 2015 International Council of Nurses

Caregiver burden for informal caregivers 349

caregiver socio-demographical factors and caregiver psychologi- healthcare manuals should also be published and provided
cal factors of patients with dementia were the primary sources by the government to offer family caregivers a reliable tool as
of caregiver burden among informal caregivers. The findings of references.
this systematic review enrich the understanding of the factors of
caregiver burden in regard to people with dementia living in the Author contributions
community. In addition, this systematic review could be the first C-YC, C-YH and H-SW were responsible for the study concep-
step in developing good strategies to reduce caregiver burden. tion and design. C-YC was responsible for drafting the manu-
Future research should be conducted to examine other script. C-YH and H-SW reviewed and performed the article
potential factors of caregiver burden. For example, further screening. C-YC and C-YH made critical revisions to the paper.
research can be carried out to characterize caregiver burden pat- C-YH supervised the study.
terns in family caregivers of individuals with dementia. To date,
most research targeting on caregiver burden primarily are cross- References
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