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: [email protected]

Conflict of interest statement The authors declare that they have no conflict of interests.

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Literature Reviews

Caregiver burden for informal caregivers

Introduction Background

With life expectancy increasing worldwide, the ageing population will increase (Chan 2010). Consequently, caring for this population will be a challenging issue because of the high demand and heavy load of gerontological caregiving (Etters et al. 2008). This challenge will affect not only the families of the older people but also their healthcare professionals. Dementia is one of the most challenging age-related illnesses for caregivers and healthcare professionals (Huang et al. 2012). According to the World Alzheimer Report (2012), there were appropriately 36 million people suffering from dementia worldwide and that number is expected to increase to 66 million by 2030 and to 115 million by 2050. Dementia is a progressive illness (Donaldson et al. 1997). Both formal and informal caregivers are expected to assume increased responsibility as the patient with dementia deteriorates. Associated with the increasing lifespan across communities, caregivers will over time be confronted by increases in dementia-related symptoms and extended disease progression. The projected increase in the duration of lifespan and the associated progressive deterioration of persons with dementia will lead to increased stress and burden on both formal and informal caregivers. The term ‘caregiver burden’ is most often used to describe this phenomenon. Zarit et al. (1986) defined caregiver burden as ‘the degree to which a carer’s emotional or physical health, social life or financial status had suffered as a result of caring for their relative’ (p. 261). In this systematic review article, caregiver burden referred to ‘a high level of physical, psychological, emotional, behavioural and financial burden that may be experienced by informal caregivers who are caring for people with dementia’. Several studies have explored the caregiver burden of formal and informal caregivers who provide care to people with dementia. For example, Bertand et al. (2006) proposed that the informal caregivers of older persons with dementia experienced higher levels of burden and depression than those caring for older persons without dementia. The concept of caregiver burden is complicated and multidimensional. Dang et al. (2008) proposed that caregiver burden involves the overall physical, psychological, emotional and financial toll of providing care. Several studies have discussed the caregiver burden associated with dementia from different perspectives. Two main dimensions were identified: the characteristics of the patient and the characteristics of the caregiver. Literature review articles have summarized the specific patientrelated factors for the caregiver burden associated with dementia as the patients’ type of dementia, extent of personality change, as well as the presence of psychiatric symptoms and

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behavioural disturbances in the patient. In contrast, the caregiver-related factors for the caregiver burden associated with dementia are gender, cultural values, the relationship with the person with dementia, the amount of informal and formal care available and the caregiver’s physical and mental status, personality and coping strategies (Etters et al. 2008; Torti et al. 2004). Informal caregivers are non-professional people (such as a family member, friend or paid caregiver) who provide care in a home setting for another person and who usually deliver care to people with disabilities and people with dementia (Etters et al. 2008). These caregivers provide most of the assistance and supervision that are necessary to fulfill the basic needs of people with dementia living in the community (Etters et al. 2008). Because informal caregivers tend to lack professional knowledge and have limited care-related training to perform the activities needed to meet the needs of people with dementia, it is likely that they will experience a greater care-induced burden such as depressive symptoms (Huang et al. 2009). Although some positive effects of dementia caregiving have been identified (Lim et al. 2011), most studies have reported adverse outcomes from this type of caregiving.

Aim Over the past few years, several meta-analysis and review articles have evaluated the effectiveness of interventions that support caregivers for people with dementia (Brodaty et al. 2003; Etters et al. 2008; Parker et al. 2008; Schoenmakers et al. 2010; Thompson et al. 2007). In addition, one systematic review clarified the determinant models of subjective caregiver burden in dementia patients (van der Lee et al. 2014) and another systematic review identified the caregiving stressors among professional caregivers (Pitfield et al. 2011). However, few systematic have defined the caregiver burden on informal caregivers of people with dementia. Recognized risk factors of caregiver burden by distinguishing patient and caregiver characteristics associated with caregiver burden have not yet been systematically analysed. Therefore, the aim of the review article is to identify the main factors of caregiver burden among the informal caregivers of people with dementia living in the community.

Methods Inclusion criteria Types of studies

Types of studies included in this review article were systematic reviews, meta-analyses, qualitative studies, cross-sectional

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studies, cohort studies, correlational studies, longitudinal study, case control studies and observational studies. Types of participants

The systematic review article included informal caregivers who provided care for people with dementia living in the community. Informal caregivers were defined as non-professional individuals who provided most of the assistance and supervision to fulfill the basic needs for people with any type of dementia. The relationships between caregivers and dementia patients could be biological, by marriage or by choice. The types of dementia included Alzheimer’s disease, vascular dementia, dementia with Lewy bodies, frontotemporal dementia, Creutzfeldt-Jakob disease and Korsakoff’s syndrome. Types of outcomes

The primary outcome of the systematic review was caregiver burden among informal caregivers. The secondary outcomes of this review included stress or strain among informal caregivers. Exclusion criteria

The exclusion criteria included articles which (a) were intervention studies, (b) were institution-based research, (c) provided informal care for people with a memory problem rather than dementia, and (d) were professional caregivers. Articles were excluded if caregiver burden was not clearly define or was measured by different domains of instruments rather than caregiver burden.

reviewer for relevance to the review based on the title and abstract. Next, quality assessments were conducted by the other two independent reviewers. A total of 17 articles were identified. Furthermore, four additional articles met the inclusion criteria when searching the references of the 17 articles. As a result, 21 articles met the inclusion criteria of this study. The articles were summarized and compared based on the research design, the sample size, the type of dementia, the caregiver’s relationship with the patient, the living arrangement, the caregiver burden measure and the factor(s) investigated (patient characteristics and caregiver characteristics). Quality appraisal

Quality assessments were performed using the ‘Joanna Briggs Institute Critical Appraisal Checklists’ that were designed at the Joanna Briggs Institute (Joanna Briggs Institute 2011). The checklists include 7–11 questions, depending on the types of study design. A sample question from the appraisal tools for descriptive studies was ‘Were the criteria for inclusion in the sample clearly defined?’ The choices of answers were ‘yes’, ‘no’, ‘unclear’ or ‘not applicable’. The overall appraisal of ‘include’, ‘exclude’ or ‘seek further information’ were presented in the last section of the checklist. Two reviewers were assigned to assess the selected articles independently. They were also asked to make the final appraisals. Articles were included or excluded from this study based on agreement between the two reviewers. When the appraisal of one of the reviewers was ‘seek further 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 PubMed, PsycINFO, the Cochrane Library and CINAHL, were searched to access relevant articles. The articles selected were published from 2003 to 2012 since the review study performed by Parker et al. (2008) was published covering an earlier period of time. A comprehensive search was performed using the following MeSH terms: ‘caregiver’, ‘burden’ and ‘dementia’ and the following thesaurus terms: ‘dementia’, ‘caregivers’, ‘informal’, ‘family members’ and ‘burdens’ in different combinations. The limits were set for ‘humans’ and ‘English’. The articles were carefully examined and the full articles that met the inclusion criteria, based on their title and abstract, were retrieved from the database. Search outcome

Figure 1 shows the process of selecting the articles for review. One thousand one hundred four articles were identified by database searches. Forty-six duplicate articles were removed. The rest of 1058 articles were then assessed by the primary

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Analysis

The outcomes of the selected articles were grouped as patient and caregiver characteristics. The outcomes on each group were then sorted into three thematic categories based on their common characteristics. Next, the frequency of studies within each thematic category of characteristics was identified.

Results An overview of the general results

A comprehensive search was made and the resultant 1058 articles were assessed for their relevance to this review. Among these, 997 articles were excluded from the screening process of title/abstracts reviewed and 61 full-text articles were chosen for quality assessment by two reviewers. A total of 17 articles achieved the standards of the quality assessment. Four additional articles that were identified by searching the references of the 17 articles met the inclusion criteria and achieved the standards of quality assessment. As a result, a total of 21 studies were

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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 level II evidence criterion of ‘evidence from a single quantitative descriptive or qualitative study’ based on Fineout-Overholt et al.’s (2005) proposed model of ‘levels of evidence for answering clinical questions about meaning’. Table 1 presents the summary of the included studies. Among the 21 studies, 16 studies had a cross-sectional study design, three studies had a longitudinal study design, one study had a

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cross-sectional longitudinal study design and one study was a retrospective records review. The data related to patient/ caregiver dyads were collected from 12 of the 21 studies. The main family caregivers were children or other relatives in nine of the studies and spouses in eight of the studies. The co-residing rates of the informal family caregivers and the dementia patients ranged from 57% to 100%. In addition, among the 21 studies, ten studies used the English version of

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Cross-sectional survey study

Cross-sectional study

1-year, longitudinal study

cross-sectional study

Cross-sectional study

Cross-sectional study Cross-sectional study

Predictive correlational design with a cross-sectional survey

Cross-sectional survey

2-year, international, longitudinal and observational cohort survey Cross-sectional study

McConaghy & Caltabiano (2005)

Rinaldi et al. (2005)

Heru & Ryan (2006)

Sink et al. (2006)

Andrén & Elmståhl (2007)

Davis & Tremont (2007) Boutoleau-Bretonnière et al. (2008)

Hong & Kim (2008)

Tun et al. (2008)

Froelich et al. (2009)

Kim et al. (2009)

Design

Author(s) (Year)

Table 1 The summary of included studies

609 patient/caregiver dyads

1382 patient/caregiver dyads

122 patient/informant dyads

72 family caregivers 26 FTD patient/caregiver dyads 28 AD patient/caregiver dyads 157 patient/family caregiver dyads

5788 patient/ caregiver dyads 50 family caregivers

38 caregivers

419 patient/caregiver dyads

42 carers

Sample size

AD

Mild-to-moderate AD

AD

Dementia

AD vascular dementia mixed AD vascular dementia mixed forms Mild-to-moderate AD FTD AD

AD

AD Vascular dementia

Dementia

Dementia type

Spouses (40.9%) Son & daughter-in-law (45%) Daughter and son-in-law (12.5%)

Spouses (26.8%) Daughters (26.1%) Sons (13.4%) Daughters-in-law (33.8%) Spouses (60%) Daughters (30%) Other relatives (7%) Friends (3%)

Spouses (54.7%) Children (35.8%) Other relatives (9.5%) Spouses (37%) Children (46%) Other relatives (17%) Spouses (61%) Children (29%) Other relatives (10%) Spouses (49.2%) Children (39.4%) Other relatives (11.4%) Spouses (6%) Children (60%) Other relatives (34%) Spouses (61.1%)

Relationship with the patient

Co-residing (88.2%)

Co-residing (100%)

Co-residing (77.8%)

Co-residing (78%)

Co-residing (81%)

Living arrangement

Korean version of CBI

ZBI

Screen for caregiver burden

KBI

ZBI ZBI

CB scale

ZBI

VAS-Burden

CBI

ZBI

Caregiver burden measures

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Cross-sectional and prospective observational study Cross-sectional analytic study Cross-sectional Longitudinal study Cross-sectional study

Cross-sectional study

Retrospective records review

Cross-sectional study

Cross-sectional study

Cross-sectional study

Agüera-Ortiz et al. (2010)

Sun et al. (2010)

Yeager et al. (2010)

Gallagher et al. (2011)

Lim et al. (2011)

Zawadzki et al. (2011)

51 family caregivers

84 patient/caregiver dyads 107 family caregivers

784 patient/caregiver dyads

67 African–American family caregiver 74 non-Hispanic White family caregiver

218 informal caregivers

251 patient/caregiver dyads 421 caregivers

233 white family caregiver/patient dyads 74 black family caregiver/patient dyads 857 patient/caregiver dyads

Alzheimer type

Dementia

Alzheimer type

AD vascular dementia

Dementia

Mild-to-moderate AD

Alzheimer type

Mild-to-moderate AD

Moderate-to-severe AD

AD

Spouses (9%) Children (81%) Other relatives (10%) Spouses (76.5%) Children (17.6%)

Adult children (55.5%) Spouses (44.5%) Spouses (52%) Children (33%) Spouses (49%) Children (38%) Other relatives (13%) Spouses (10.8%) in African–American group spouses (9%) in non-Hispanic White group Adult children (50.8%) Spouses (35.2%) Extended family (7.5%) Spouses (64%)

Spouses (41%) Descendants (49%)

Spouses (44.3%) Children (54.4%)

Co-residing (68.6%)

Co-residing (65%)

Co-residing (57%)

Co-residing (66.5%)

Co-residing (88%)

Co-residing (76.2%)

ZBI

ZBI

ZBI

ZBI

CCI

CBI NPIDS

ZBI

Spanish version of ZBI

Spanish version of ZBI

Burden

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.

Sinforiani et al. (2010)

Mohamed et al. (2010)

Conde-Sala et al. (2010)

Longitudinal study

Skarupski et al. (2009)

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Table 2 The summary of risk factors for caregiver burden grouped by patient and caregiver characteristics Characteristics Patient characteristics Behavioural or psychological factors Functional status Prevalence of behavioural disturbances Levels of neuropsychiatric symptoms Disease-related factors Severity of the dementia Type of dementia Duration of the illness Patient socio-demographical factors Levels of education Caregiver characteristics Caregiver socio-demographical factors Monthly income Gender Educational level Cohabitation with the patient Ethnicity Psychological factors Psychological health Perceived well-being Depressive symptoms Religious coping skills Self-sufficiency for symptom management Anxiety Aggressiveness Authoritarianism Caregiving-related factors Patient care load Family functioning

Authors

Gallagher et al. 2011; Kim et al. 2009; Rinaldi et al. 2005; Sink et al. 2006; Yeager et al. 2010 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 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 Lim et al. 2011; Mohamed et al. 2010; Skarupski et al. 2009; Sink et al. 2006 Boutoleau-Bretonnière et al. 2008 Kim et al. 2009 Agüera-Ortiz et al. 2010; Kim et al. 2009

Andrén & Elmståhl 2007; Kim et al. 2009 Kim et al. 2009; Skarupski et al. 2009; Yeager et al. 2010 Kim et al. 2009; Sinforiani et al. 2010 Conde-Sala et al. 2010 Skarupski et al. 2009; Sun et al. 2010 Andrén & Elmståhl 2007; McConaghy & Caltabiano 2005 McConaghy & Caltabiano 2005 Davis & Tremont 2007; Yeager et al. 2010 Sun et al. 2010 Gallagher et al. 2011 Zawadzki et al. 2011 Zawadzki et al. 2011 Zawadzki et al. 2011 Froelich et al. 2009; Kim et al. 2009; Skarupski et al. 2009 Heru & Ryan 2006

Zarit Burden Inventory (ZBI) and two studies used the Spanish version of ZBI for the outcome measurement of caregiver burden. Table 2 presents the summary of risk factors for caregiver burden grouped by patient and caregiver characteristics. The detailed description is described as follows. Patient characteristics as factors of caregiver burden

Patient characteristics were grouped into three categories, which included behavioural or psychological factors, disease-related factors and patient socio-demographical factors. Behavioural or psychological factors, including 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

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(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) and 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), were the most frequently proposed patient characteristics as factors of caregiver burden and this category was included in 11 of the 21 studies. Patients with dementia with a poor functional status, a high prevalence of behavioural disturbances and a high level of neuropsychiatric symptoms were associated with their primary family caregivers experiencing a greater burden from their caregiving. Disease-related factors, including severity of the dementia (Lim et al. 2011; Mohamed et al. 2010; Sink et al. 2006;

Caregiver burden for informal caregivers

Skarupski et al. 2009), type of dementia (Boutoleau-Bretonnière et al. 2008) and duration of the illness (Kim et al. 2009), were included in six studies. Patients with dementia with worsening severity of dementia, frontotemporal dementia and long duration of the illness were associated with their primary family caregivers experiencing a greater burden from their caregiving. In addition, levels of education among patients with dementia (Agüera-Ortiz et al. 2010; Kim et al. 2009) were recognized as the patient socio-demographical factor of caregiver burden. Patients with dementia with lower levels of education were correlated to their primary family caregivers experiencing a greater burden from their caregiving.

Caregiver characteristics as factors of caregiver burden

Caregiver characteristics were grouped into three categories, which included caregiver socio-demographical factors, psychological factors and caregiving-related factors. Caregiver sociodemographical factors, including 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) and ethnicity (Skarupski et al. 2009; Sun et al. 2010), were one of the most frequently proposed caregiver characteristics as factors of caregiver burden and this category was included in seven of the 21 studies. Caregivers with low monthly income, female gender, low educational level, cohabitation with the patient and non-Hispanic Caucasian ethnicity were associated with experiencing a greater burden from their caregiving. Psychological factors, including 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) and authoritarianism (Zawadzki et al. 2011), were the second one of the most frequently proposed caregiver characteristics as factors of caregiver burden and this category was included in seven of the 21 studies. Caregivers who had poor psychological health, poor perceived well-being, high depressive symptoms, poor religious coping skills, poor self-sufficiency for symptom management, high anxiety, aggressiveness and authoritarianism experienced a greater burden from their caregiving. In addition, caregiving-related factors, including patient care load (Froelich et al. 2009; Kim et al. 2009; Skarupski et al. 2009) and family functioning (Heru & Ryan 2006), were included in four studies. Caregivers who had a relatively heavy patient care

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load and poor family functioning experienced a greater burden from their caregiving.

Caregiver characteristics as two-way factors of caregiver burden

The age of the caregiver and the relationship with the patient were found to be factors of caregiver burden in several situations. Two studies indicated that younger informal caregivers (Andrén & Elmståhl 2007; Skarupski et al. 2009) experienced a greater caregiver burden. However, Rinaldi et al. (2005) proposed that older informal caregivers experienced a greater caregiver burden. Furthermore, two studies reported that spouse caregivers (Hong & Kim 2008; Rinaldi et al. 2005) usually experienced a greater caregiver burden, whereas three other studies identified adult children (Andrén & Elmståhl 2007; Conde-Sala et al. 2010; Yeager et al. 2010) as the caregivers who experienced a greater caregiver burden.

Discussion Caring for people with dementia is a stressful and difficult task, especially among informal caregivers. Informal caregivers caring for individuals with dementia were confirmed to present higher levels of burden and depression than caregivers of persons with stroke (Huang et al. 2009). Existing literatures revealed that the patients’ severity of dementia, behavioural disturbances, extent of personality change, as well as the presence of psychiatric symptoms were the main patient-related factors contributing to caregiver burden (Etters et al. 2008; Pinquart & Sörensen 2003; Torti et al. 2004; van der Lee et al. 2014). The results of this systematic review were consistent with previous findings. With regard to patients’ characteristics, the primary factor of caregiver burden was behavioural problems or psychological symptoms. Patients’ functional status, prevalence of behavioural disturbances and levels of neuropsychiatric symptoms, such as wandering and delusions, were most burdensome to informal caregivers. It is important to note that physical limitations of the patient was identified as a factor of caregiver burden in this review article, whereas previous review articles did not report patient’s degree of difficulty with activities of daily living as a factor of caregiver burden (Etters et al. 2008; Torti et al. 2004). Furthermore, both Donaldson et al.’s review article from 1997 and Burns and Rabin’s article from 2000 reported that no significant relationship was found between the caregiver burden and the limitations to activities of daily living in the patients. In both of those articles, the terms ‘burden’, ‘caregiver strain’ and ‘stress’ were classified as the same aspects of caregiver burden, whereas our study clearly and more specifically defined the term car-

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egiver ‘burden’ for this systematic review, which would account for the difference between our study results and the results of those two studies. Furthermore, existing review literatures revealed that the caregiver-related factors for the caregiver burden associated with dementia were gender, age, cultural values, the relationship with the person with dementia, duration of caregiving and the caregiver’s physical and mental status, personality and coping strategies (Burns & Rabins 2000; Etters et al. 2008; Torti et al. 2004; van der Lee et al. 2014). From the caregiver’s perspective identified through this review, caregiver socio-demographic factors (monthly income, gender, educational level, cohabitation with the patient and ethnicity) as well as psychological factors (psychological health, perceived well-being, depressive symptoms, religious coping skills and anxiety) were the two main factors of caregiver burden. In addition, female caregivers were observed to experience more caregiver burden than male caregivers. The same results were also described by Pinquart & Sörensen (2005), Etters et al. (2008) and Chan’s (2010) research. Contrary results for burden related to the age of the caregiver were identified. Some studies indicated that younger caregivers experienced great perception of burden; others found that older caregivers experienced a greater sense of burden. Both results are reasonable: older caregivers usually have poor physical and psychological health, whereas younger caregivers usually have less experience in caregiving or a feeling of social restrictiveness, consistent with the factors of caregiver burden identified in our study (Andrén & Elmståhl 2007; Kim et al. 2009; McConaghy & Caltabiano 2005; Sinforiani et al. 2010; Zawadzki et al. 2011). Other review articles have also examined the effect of the caregivers’ age on caregiver burden. Chan (2010) reviewed caregiver burden from an Asian cultural perspective and found that middle-aged and older women who provided care for an ill or disabled spouse in Asia usually experienced more caregiver burden, which was consistent with the findings of Rinaldi et al. (2005) from an Italian point of view. Therefore, it is logical that caregiver burden could be influenced by cultural differences. Further review articles could be performed to compare culture differences in caregiver burden. Another explanation for the contrary results of caregiver age was that caregiver age may not be linearly associated with caregiver burden. They might present different patterns throughout the course of caregiving. For example, younger caregivers may have less experience in caregiving, which results in heavier caregiver burden. As the care situation progresses, they could adjust to the situation and learn more skills in caregiving. At this time point, they may experience less caregiver burden. However, with caregiver age increasing, they need to take more

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role responsibilities and to fulfill accumulative care demands. Consequently, caregivers may experience increasing feelings of burden. Caregiving is a dynamic process. Understanding how caregiver burden changes over time is crucially important. To our knowledge, only one study has characterized psychological patterns among family caregivers of care recipients with primary malignant brain tumours (Choi et al. 2012), but none of the research has been conducted targeting on the caregivers of the population of people with dementia. Further research should be undertaken to identify caregiver burden patterns throughout the course of caregiving in informal caregivers of people with dementia. In addition, different results of caregiving outcomes in the relationship with the patient as a factor of caregiver burden were also verified. Spouse caregivers and adult children caregivers experience the greatest burden compared with other informal caregivers of people of dementia. There are some possible explanations for this finding. Nearly 100% of the spouse caregivers in our study were cohabitating with the patient with dementia, which might place a heavier patient care load on them. Therefore, because a heavier patient care load and living with the patient were found to be associated with caregiver burden, spouse caregivers will logically suffer a heavier caregiver burden compared with other caregivers. Adult children caregivers, especially Asian–American daughter-in-law caregivers (Pinquart & Sörensen 2005), are usually expected to assume the caregiver role regardless of the quality of their relationship with their in-law. Furthermore, poor family functioning (Heru & Ryan 2006) has been identified as a factor of caregiver burden in this study. As a result, adult children caregivers may suffer high levels of burden from caregiving. In sum, regardless of the relationship between the caregiver and the patient, closer kinship ties are associated with increased caregiver burden (Etters et al. 2008).

Conclusion This study has limitations. The concept of caregiver ‘burden’ was not clearly defined in some of the studies; instead, the term was broadly defined. For example, some of the investigations used the ZBI scale to measure the outcome variable of ‘strain’, ‘depression’ or ‘stress’. Because the definitions of those terms can vary and differ from our concept of caregiver burden, it was difficult to identify the key outcome variable in those studies during our screening process. Despite its limitations, the present study systematically examined the literature on the principal factors of caregiver burden among informal caregivers of people with dementia living in the community. The results of this systematic review demonstrated that behavioural problems or psychological symptoms,

Caregiver burden for informal caregivers

caregiver socio-demographical factors and caregiver psychological factors of patients with dementia were the primary sources of caregiver burden among informal caregivers. The findings of this systematic review enrich the understanding of the factors of caregiver burden in regard to people with dementia living in the community. In addition, this systematic review could be the first step in developing good strategies to reduce caregiver burden. Future research should be conducted to examine other potential factors of caregiver burden. For example, further research can be carried out to characterize caregiver burden patterns in family caregivers of individuals with dementia. To date, most research targeting on caregiver burden primarily are crosssectional, whereas research with longitudinal designs are needed. Trajectory analysis of caregiver burden over time could be applied to identify trajectories of caregiver burden among informal caregivers of individuals with dementia living in the community. By identifying all of the factors that influence dementia-related caregiver burden, healthcare professionals can deliver appropriate assistance to relieve caregiver burden and to improve the quality of caregiving to people with dementia. In addition, studies associated with predictors of caregiver burden have been discussed all over the world. However, the similarities or differences in caregiver burden from these different cultures have not yet been explored. Further review articles should be carried out to compare caregiver burden with culture differences.

Implications for nursing and health policy

The results of this review article contribute to clinical practice as factors of caregiver burden in regard to people with dementia living in the community were clarified. Early prevention could be made to diminish their caregiver burden. In addition, it is also important to identify factors of caregiver burden to prevent early nursing home placement and to prevent the deterioration of the caregiver’s health as well as to reduce adverse health outcomes to care recipients. Healthcare professionals play an essential role in supporting the informal caregivers of people with dementia. It will also be helpful to provide clinical nurses with basic knowledge background about the factors associated with caregiver burden for informal caregivers of people with dementia to help nurses design and conduct an evidenced-based educational programme in reducing caregiver burden for community-based informal caregivers. In addition, a healthrelated policy should also be formulated to help informal caregivers receive more professional assistance. Training opportunities should be provided for informal caregivers, especially those novel caregivers, to reduce the impact of caregiving on the delivery of effective care. Furthermore, standardized

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healthcare manuals should also be published and provided by the government to offer family caregivers a reliable tool as references.

Author contributions C-YC, C-YH and H-SW were responsible for the study conception and design. C-YC was responsible for drafting the manuscript. C-YH and H-SW reviewed and performed the article screening. C-YC and C-YH made critical revisions to the paper. C-YH supervised the study.

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Caregiver burden for informal caregivers of patients with dementia: A systematic review.

Dementia is an irreversible illness. The caregiver is expected to assume increased responsibility as the condition of the person with dementia decline...
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