Reliability and validity of the Japanese version of the Zarit Caregiver Burden Interview

Abstract  Despite a rapid increase in disabled elderly in Japan, the burden of the caregiver has not been properly assessed due to a lack of objective measurements. Our study was aimed at adapting and validating the Zarit Caregiver Burden Interview (ZBI) in Japan, which is one of the most widely used measurements for caregivers' burden in the United States. Sixty-six caregivers answered the self-administered questionnaire, involving the Japanese version of the ZBI and questions regarding their caregiving situation. Our study demonstrated that the Japanese version of the ZBI had equally as high reliability and validity as the original version. The Japanese ZBI had a high test—retest reliability (r = 0.76) and internal consistency (Cronbach's alpha = 0.93). The total score of the ZBI was highly correlated with the caregivers' score of the Center for Epidemiologic Studies Depression Scale (CES-D) score (r = 0.50), as well as a single global rating of burden (r = 0.71). It was also shown that demographic distribution of the score of the Japanese version had a similar trend to that of the original version. Caregivers who looked after patients with behavioral disturbances were found to have a significantly higher ZBI score than those who looked alter patients without behavioral disturbances, which is consistent with previous findings. It is concluded that the Japanese version of the ZBI can be used to measure feelings of burden of caregivers in the Japanese population and can be used for cross-cultural comparison.     

Undue concern for others' opinions deters caregivers of impaired elderly from using public services in rural Japan

OBJECTIVE: To determine whether opinions of others may discourage the use of public services for the elderly. DESIGN: Users and non-users were compared regarding several variables including caregivers' concerns about opinions of others. SETTING: Matsuyama Town, located in a rural area of northern Japan. SUBJECTS: Seventy pairs of (1) elderly persons in need of care assessed by the procedure employed by the Ministry of Health and Welfare, and (2) their respective family caregivers. MEASURES: Cognitive function (Hasegawa Dementia Rating Scale), diagnosis of dementia, activities of daily living (ADL: Barthel Index), caregivers' burden (Zarit Caregiver Burden Interview), behavioral disturbances (Dementia Behavioural Disturbance Scale), caregiver interviews. RESULTS: A logistic regression analysis revealed that those who looked after the elderly with severe dependency in ADL were three times more likely to use public services (OR = 3.33, 95% CI = 1.02 - 10.88, p = 0.04). Those concerned about what others think or say were less likely to use public services (OR = 0.22, 95% CI = 0.06 - 0.78, p = 0.01) than those who did not. CONCLUSIONS: Caregivers' undue concern for the opinions of others apparently deterred them from using public services. The overriding notion of care for the elderly as a family duty is still prevalent in rural Japan. It would be useful for the government to launch a public awareness programme to help caregivers understand the benefits of services available for the elderly.     

Factors related to feelings of burden among caregivers looking after impaired elderly in Japan under the Long-Term Care insurance system

Since the 1970s, the burden of caregiving has been the subject of rather intense study, a trend that will continue with the rapid graying of populations worldwide. Since the Long-Term Care insurance system began in 2000, few cross-sectional studies have attempted to identify factors related to the feelings of burden among caregivers looking after the impaired elderly in Japan. In the present report, among 46 pairs of caregivers and impaired elderly, the elderly receiving regular nurses' visits in Kyoto Prefecture, Japan were assessed for problems with activities of daily living, the severity of dementia, the presence of behavioral disturbance, and cognitive impairment. The caregivers were asked to complete questionnaires in relation to their feelings of burden and caregiving situation. The results indicated that caregivers of impaired elderly with behavioral disturbances were more likely to feel a 'heavier burden.' Those temporarily relieved of caregiving three or more hours a day were less likely to experience 'heavier' caregiver burden than those who were not. Moreover, caregivers who found it 'inconvenient' to use care services tended to be more likely to feel a 'heavier' caregiver burden than those who did not. Recourse to respite services, which are ideally positioned to help, proved inconvenient because of their advance reservation system. More ready access to respite services in emergencies could do much to reduce caregiver burden.     

Caregiver burden in mobile and non-mobile demented patients: a comparative study

OBJECTIVES: to identify the impact of behavior disturbances on subjective burden of caregivers in demented patients attending day care services. METHODS: subjects were 379 primary caregivers of randomly sampled demented patients living at home, who attended geriatric day care programs. The caregiver burden of the mobile and non-mobile demented patients were measured using the Zarit Caregiver Burden Interview (ZBI). The Mini-Mental State Examination (MMSE) and the Personal Self-Maintenance Scale (PSMS) were used to assess the patients' condition. The Troublesome Behavior Scale (TBS), originally developed in Japan, was used to assess the frequency of behavior disturbances exhibited by patients. RESULTS: the caregivers of the mobile demented patients reported greater caregiver burden compared to those of the non-mobile demented patients. The frequency of behavior disturbance was significantly higher in the mobile patients than the non-mobile patients. For the mobile patient caregivers, wandering, interfering, aggression and repetition were the predictors of caregiver burden. For the non-mobile patient caregivers, 'repeating same questions and/or clinging' was the only predictor of caregiver burden. CONCLUSION: the caregivers of the mobile demented patients reported higher burden due to the patients' behavior disturbance compared to those of the non-mobile patients. These findings indicate a need for further development of interventions to prevent behavior disturbances that are especially burdensome for caregivers.     

Caring for an elderly person: Presictors of burden in dementia care

In a population-based study, the burden of caring for an elderly relative was investigated. In this article the nature of burden, reported by the relatives of the elderly, is described according to Pearlin's conceptual model. Background factors and context as a well as primary stressors were analysed. The close relatives were interviewed with a structured burden questionnaire. Among the background variables, gender of the caregiver was strongly associated with a heavy burden. Behaviour disturbances also emerged as a predictive factor of burden. Analysis of the primary stressors indicated that in the mild phase of dementia, long duration of the disease and decreased ADL capacity cause greater burden for the caregiver.     

Falls of the elderly are associated with burden of caregivers in the community

BACKGROUND: Little attention has been paid to the impact on caregivers who provide care to a family member who has falls. The purpose of the current study was to determine whether falls of care recipients are associated with caregivers' burden. METHODS: A cross-sectional study of 1874 community-dwelling care recipients and 1478 caregivers was conducted. We examined the characteristics of care recipients and caregivers, including demographic characteristics, depressive mood as assessed by the Geriatric Depression Scale (GDS-15), the basic activities of daily living (bADL), fall history in the past 6 months, and physician-diagnosed chronic diseases to determine whether there was an association with caregivers' burden as assessed by the Zarit Burden Interview (ZBI). RESULTS: A total of 567 care recipients (30.3%) had a history of falls in the past 6 months. The mean ZBI score of caregivers with falls was significantly higher than that of caregivers without falls. There were negative correlations between the ZBI score and recipient bADL score and positive correlations between the ZBI score and GDS-15 scores of the recipient and caregiver, the level of severity of dementia, and the Charlson comorbidity index. Male recipient, fall history, behavioral disturbance, and dementia had significantly higher ZBI scores than those of controls. The stepwise multiple regression analyses found that the GDS-15 score of caregivers and recipients, level of severity of dementia, bADL score, and fall history were independently associated with the ZBI score. CONCLUSION: Among the community-dwelling frail elderly, falls are associated with caregiver burden even when controlling for various possible confounding factors.     

Impact of donepezil hydrochloride on the care burden of family caregivers of patients with Alzheimer's disease

Background: To evaluate the impact of donepezil hydrochloride on the care burden on family members of patients with Alzheimer's disease (AD). At present, donepezil is the only drug approved for the treatment of AD in Japan. Although the care burden on primary caregivers of AD patients comprises both physical and psychological burdens and donepezil is recognized to improve cognitive dysfunction and associated symptoms, there are few data on the effects of the drug on the care burden. Methods: Of the uninstitutionalized AD patients who visited a dementia clinic between June 2008 and May 2009 with their primary family caregivers, 416 subjects who satisfied the enrollment criteria were registered for the study. All participants provided informed consent. Assessment included changes in scores on the Japanese version of the Zarit Caregiver Burden Interview (J‐ZBI) and the Mini‐Mental State Examination (MMSE), as well as the presence of behavioral and psychological symptoms of dementia (BPSD). Caregivers answered the questionnaires at baseline and after 12 weeks treatment with donepezil (starting dose 3 mg, p.o., once daily, followed by 5 mg after 1 or 2 weeks). Results: There were significant changes in mean scores on the J‐ZBI (?1.9 ± 9.5; P < 0.01) and MMSE (+0.9 ± 2.9; P < 0.01) from baseline to Week 12, without significant correlation between these two scores. In patients with BPSD, there was a significant decrease in J‐ZBI scores over the 12 weeks (P = 0.013); in contrast, in patients without BPSD, the decrease in the J‐ZBI score did not reach statistical significance (P = 0.418). Conclusions: The results indicate that donepezil improves cognitive function and some of the BPSD. As a possible consequence of improvements in BPSD, donepezil may also reduce caregivers' burden.     

Validation of 'personal strain' and 'role strain': subscales of the short version of the Japanese version of the Zarit Burden Interview (J-ZBI_8)

The eight-item short version of the Japanese version of the Zarit Burden Interview (J-ZBI_8) has been confirmed for reliability and validity, and its two subscales (personal strain and role strain) are based on the factor structure of the ZBI. It has been demonstrated that these subscales have good reliability. The aim of the present study was to confirm their construct validity. A total of 51 impaired elderly who had been receiving regular nurses' visits in Kyoto Prefecture, Japan and their family primary caregivers, participated in the present study. Each caregiver was asked to complete a questionnaire which included the J-ZBI_8, the hours spent in caregiving, and the physical and cognitive disability of the impaired elderly. A principal component analysis identified the following two principal components of these variables: 'Activities of Daily Living deficits' and 'behavioral disturbances'. Consequently, Barthel Index (BI) and Troublesome Behavior Scale (TBS) were selected as the representative variable, respectively, for each component. We subsequently calculated the Spearman's rank correlations among the subscales of J-ZBI_8, BI and TBS. Personal strain was found to be correlated with TBS (rho = 0.48, P < 0.01), while role strain was correlated with the BI (rho = -0.29, P = 0.04). The correlation between personal strain and BI was not significant, nor was the correlation between role strain and TBS. These findings indicate that the personal strain and role strain measured by J-ZBI_8 correspond to the personal strain and role strain of the ZBI originally described by Whitlatch et al. Therefore, the construct validity of the J-ZBI_8 subscales is confirmed.     

Validity and reliability of the Japanese version of the Neuropsychiatric Inventory Caregiver Distress Scale (NPI D) and the Neuropsychiatric Inventory Brief Questionnaire Form (NPI-Q)]

OBJECTIVE: Neuropsychiatric disturbances are common and burdensome symptoms of dementia. Assessment and measurement of neuropsychiatric disturbances are indispensable to the management of patients with dementia. Neuropsychiatric Inventory (NPI) is a comprehensive assessment tool that evaluates psychiatric symptoms in dementia. We translated the NPI-Caregiver Distress Scale part of NPI (NPI-D) and NPI-Brief Questionnaire Form (NPI-Q) into Japanese and examined their validity and reliability. SUBJECTS AND METHODS: The subjects were 152 demented patients and the caregivers who lived with them. These patients consisted of 76 women and 76 men; their mean age was 73.9 +/- 7.8 (S.D.; range: 49 to 93) years. Their caregivers consisted of 46 men and 106 women; their mean age was 65.0 +/- 11.4 (S.D.; range: 35 to 90) years. The Mini-Mental State Examination (MMSE) was conducted with all patients and NPI-Q, NPI, NPI-D, and the Zarit caregiver burden interview (ZBI) were conducted with all caregivers. We examined validity of NPI-D by comparing its score with the MMSE and ZBI scores, and the validity of NPI-Q by comparing its score with the NPI and NPI-D scores. In order to evaluate test-retest reliability, NPI-D was re-adopted to 30 randomly selected caregivers by a different examiner one month later and NPI-Q was re-executed by 27 randomly selected caregivers one day later. RESULTS: Total NPI-D score was significantly correlated with ZBI (rs = 0.59, p < 0.01). Test-retest reliability of NPI-D was adequate (ri = 0.47, p < 0.01). Total NPI-Q severity score and distress score were strongly correlated with NPI (r = 0.77, p < 0.01) and NPI-D (r = 0.80, p < 0.01) scores, respectively. Test-retest reliability of the scores of NPI-Q was acceptably high (the severity score; ri = 0.81, p < 0.01, the distress score; ri = 0.80, p < 0.01). CONCLUSION: The Japanese version of NPI-D and NPI-Q demonstrated sufficient validity and reliability as well as the original version of them. These are useful tools for evaluating psychiatric symptoms in demented patients and their caregivers' distress attributable to these symptoms.     

Factors related to potentially harmful behaviors towards disabled older people by family caregivers in Japan

OBJECTIVE: The purpose of the present study was to examine factors related to potentially harmful behaviors (PHB) by family caregivers towards their older family members. METHODS: Four hundred and twelve pairs of disabled older adults and their family caregivers participated in the study. All of these disabled older adults were users of visiting nursing services under the public Long-Term Care insurance system, who resided in one of the eight catchment areas of visiting nursing services in Kyoto Prefecture, Japan. The caregivers were asked to complete questionnaires in relation to their PHB towards their older family members, caregiver burden, patient-caregiver kinship, behavioral disturbances of their older adult, age and sex. Visiting nurses obtained the following information regarding the older adults: the severity of dementia; the severity of physical impairment; age and sex. RESULTS: More than 30% of the caregivers admitted PHB towards their older family members. The most frequently reported PHB included verbal aggression (16.8%) and ignoring (13.6%). A logistic regression analysis revealed that adult children (OR = 2.69, 95%CI = 1.23-5.89, p = 0.013) and caregivers of disabled older people with behavioral disturbances (OR = 3.61, 95%CI = 1.65-7.90, p < 0.01) were more likely to show PHB. CONCLUSIONS: In the present study, PHB towards the older people by family caregivers was associated with patients' behavioral disturbances and patient-caregiver kinship, i.e. an adult child as a caregiver. These findings should be taken into account when planning strategies to prevent PHB by family members.     

Prospective Evaluation of Behavioral Scales in the Behavioral Variant of Frontotemporal Dementia

Background: The Neuropsychiatric Inventory (NPI) and the Frontal Behavioral Inventory (FBI) are widely used in patients with the behavioral variant of frontotemporal dementia (bvFTD). Yet, few data are available on the long-term relevance of these scales. Material and Methods: Based on a bvFTD population that participated in the Memantine Clinical Trial (NCT00200538), we studied the evolution and correlation between scores obtained on behavioral scales (NPI and FBI), cognitive scales [Mini-Mental State Examination (MMSE) and Mattis Dementia Rating Scale (MDRS)] and a burden scale [Zarit Burden Inventory (ZBI)]. The assessments were performed at 1 year in 41 patients and at 2 years in 23 patients who agreed to participate in this open-label study. Results: The 2-year scores obtained on the FBI were significantly higher than the scores at inclusion while those obtained on the NPI did not change. There were significant correlations between the FBI, and the MDRS and MMSE, especially regarding the negative items. The ZBI correlated with behavioral scales at all stages for positive items. Conclusions: This study based on a large population shows that the FBI is a better tool than the NPI for the long-term assessment of bvFTD patients. Moreover, the FBI allows a distinction to be made between behavioral disturbances that involve cognitive functions from those which have an important impact on caregiver burden.     

Problems family caregivers encounter in home care of patients with frontotemporal lobar degeneration

Aim: Frontotemporal dementia (FTD) is a degenerative dementia in which primary degeneration of the frontal region of the brain occurs. Because of the behavioral symptoms, the care of FTD patients has numerous problems. However, little has been clarified with regard to the actual care situation, especially in a family care setting. The aim of the present study was to elucidate the caregiver burden and problems associated with the care of FTD patients in home care settings. Methods: Two patients were diagnosed with FTD on the basis of the Lund and Manchester group criteria at the clinic for outpatients of a hospital located in Aichi Prefecture, Japan. Semi‐structured interviews were conducted with the family caregivers of the FTD patients. The content of the interview covered the patient course and any problems encountered in the home setting regarding activities of daily living (ADL), behavioral disorders and cognitive function. Results: These FTD patients had abnormal eating behaviors such as cramming of food into one's mouth and the abnormal manner of eating. They had to be fed bit by bit with total caregiver assistance. They were also overactive, restless and distractable, which subsequently caused problems with ADL‐assistance including extreme uncooperativeness toward their caregivers. Other behavioral symptoms associated with FTD, e.g., stereotypic behavior, distractability and high impulsivity, were also considerably burdening to the caregivers. Conclusion: The behavioral symptoms peculiar to FTD pose huge problems and heavy burden to the family caregiver. More resources should be allocated to specific needs of the FTD patients and their families.     

Evaluation of gender differences in caregiver burden in home care: Nagoya Longitudinal Study of the Frail Elderly (NLS-FE)

Background: Japan is presently experiencing a growth in the number of male caregivers and this situation has given rise to some concerns over gender differences. Previous studies have suggested that there are gender differences in caregiver burden in home care, however, it is still unclear whether or not gender differences exist. We therefore conducted this study to attain a better understanding of the Japanese male caregiver burden in home care, using data from the Nagoya Longitudinal Study of Frail Elderly (NLS‐FE). Methods: NLS‐FE is a large prospective study of community‐dwelling elderly persons eligible for public long‐term care insurance who live in Nagoya city and use the services of the Nagoya City Health Care Service Foundation for Older People, which comprises 17 visiting nursing stations and corresponding care‐managing centers, from November to December 2003. Data used in this study included the Japanese version of the Zarit Caregiver Burden Interview, caregivers’ and dependents’ characteristics, and the caregiving situation. The differences in dependent and caregiver characteristics between male and female caregiver groups were assessed using the χ²‐test for categorical variables or the unpaired t‐test for continuous variables. Multiple logistic regression was used to examine the association between dependent and caregiver characteristics and caregiver burden. Results: A total of 399 male caregivers and 1193 female caregivers were included in our analysis. Before and after controlling baseline variables, we did not detect a difference between male and female caregivers with respect to caregiver burden. Conclusion: Our study suggests that differences in caregiver burden may not necessarily exist between male and female caregivers in Japan.     

Depression among caregivers of the disabled elderly in southern Japan

The present study was conducted in an attempt to investigate factors related to depression of caregivers who looked after the disabled elderly residing in a community in southern Japan. A questionnaire survey was carried out of 45 pairs of caregivers and the disabled elderly who received regular visits from a practice nurse, who was located in Onga County, Fukuoka, in southern Japan. Twenty-four out of 45 caregivers (53.3%) scored above the conventional cut-off of the Center for Epidemiologic Studies Depression Scale (CES-D). The proportion of children-in-law caregivers was significantly smaller (0% vs. 23.8%, P = 0.01) and the proportion of caregivers who had consulted a physician within 1 month prior to the study was greater in the depressed than that in the non-depressed (79.2% vs. 47.6%, P = 0.03). The elderly whose caregivers were depressed (group 1) had more behavioural disturbances than those of the non-depressed caregivers (group 2) (1.92+/-2.38 vs. 0.52+/-0.87, P = 0.01) A multiple logistic regression analysis revealed that only behavioural disturbance was positively related to depression (Odds ratio: 4.29, 95% confidence interval: 1.28-14.37). More behavioural disturbances led the caregivers to depression or the depressed caregivers failed to take care of the elderly, which resulted in an increase in the number of the behavioural disturbances of the elderly.     

Factors Associated with Caregiver Burden in Patients with Alzheimer's Disease

Objective

Caregivers for patients with Alzheimer''s disease (AD) suffer from psychological and financial burdens. However, the results of the relationship between burden and cognitive function, performance of activities of daily living, and depressive symptoms have remained inconsistent. Therefore, the aim of this study was to examine which factors are more significant predictors of heightened burden, cognitive impairment or functional decline, besides neuropsychiatric symptoms.

Methods

A cross-sectional study was conducted in a sample comprised of 1,164 pairs of patients with AD and caregivers from the Clinical Research of Dementia of South Korea study cohorts. The cognitive function of each sub-domain, functional impairments, depressive symptoms, and caregiver burden were assessed using the dementia version of Seoul Neuropsychological Screening Battery (SNSB-D), Barthel Index for Daily Living Activities (ADL), Seoul-Instrumental Activities of Daily Living (S-IADL), the Clinical Dementia Rating Sum of Box (CDR-SB), the Global Deterioration Scale (GDS), the Korean version of the Neuropsychiatric Inventory (K-NPI), and the 15-item Geriatric Depression Scale.

Results

We found that higher severity (higher CDR-SB and GDS scores) and more functional impairment (lower ADL and higher S-IADL scores) were significantly associated with higher caregiver burden. In addition, depressive symptoms of patients (higher Geriatric Depression Scale scores) were associated with higher caregiver burden.

Conclusion

Therefore, interventions to help maintain activities of daily living in patients with AD may alleviate caregiver burden and improve caregiver well-being.     

Caregiver burden and coping strategies for patients with schizophrenia: Comparison between Japan and Korea

Aim: With the current shift to community‐centered mental health services, considerable research on the family burden of caring for patients with schizophrenia has been conducted in developed countries. However, there has been no investigation of families with Japanese or Korean sociocultural backgrounds. Therefore, the present study compared the caregiver burden and coping strategies of families of patients with schizophrenia in Japan and Korea in order to elucidate similarities and differences in the sociocultural factors that affect the care experience of families in Northeast Asia. Methods: A total of 99 Japanese (Nagasaki) and 92 Korean (Seoul, Daegu) family members of patients with schizophrenia were surveyed in regards to caregiver burden, coping strategies, and nursing awareness of the caregiver role regarding the patient with schizophrenia. Results: Analysis revealed the following: (i) although no difference in caregiver burden and coping strategy was observed between the countries, the nursing awareness of families' caregiver role was significantly higher in Japan than in Korea; (ii) caregiver burden was significantly associated with the patient's social functioning and care needs in both countries; and (iii) caregiver burden was significantly associated with reduction of social interests, coercion, avoidance, resignation, and nursing awareness of caregiver role in both countries. Conclusion: Although the nursing awareness of families' roles in caring for patients with schizophrenia differed between Japan and Korea, similar trends were observed for the causes of caregiver burden. These findings suggest that in order to provide effective support for reducing caregiver burden, the necessity of such support must be emphasized in both countries.     

Family caregiver burden and quality of home care in the context of the Long-Term Care insurance scheme: an overview

This review outlines the findings of 22 studies conducted between 1997 and 2005 by Arai and 19 collaborators regarding caregiver burden and assessment of quality of home care for the elderly. The published research covers the following: cross‐sectional studies on caregiver burden; changes in caregiver burden; appropriateness of the Long‐Term Care insurance assessment scheme; attitudes towards caregiving among caregivers; the development of the short Japanese version of the Zarit Caregiver Burden Interview (J‐ZBI_8); and the effectiveness of service use in reducing caregiver burden and development of a Home Care Quality Assessment Index (HCQAI).     

Predictors of long-term institutionalization in patients with Alzheimer's disease: role of caregiver burden]

BACKGROUND AND PURPOSE: The decision of long-term institutionalization of patients with Alzheimer's disease (AD) is based on multiple patients' and caregivers' characteristics. It is very important to find out factors associated with institutionalization for the timely institutionalization, i.e. for the prevention of premature institutionalization. Among those factors, caregiver burden is reportedly one of the most important factors in Europe and North America. However, no studies have been carried out in Japan. In order to address this issue, we studied outcome of patients with AD. SUBJECTS AND METHODS: Subjects were 211 patients who fulfilled the criteria of the National Institute of Neurological Disease and Stroke/Alzheimer's Disease and Related Disorders Association for probable AD. Diagnosis of AD was made through extensive examinations including MRI and PET/SPECT of the brain. The patients included 149 women and 62 men; the mean age was 73.1 +/- 8.0 (SD) years. The Japanese version of Zarit Caregiver Burden Interview (ZBI), which is a validated tool for assessment of the burden of caregivers for dementia patients, was used to evaluate caregivers' burden through the interview of a principal caregiver by trained nurses. Cognitive, functional, and neuropsychiatric impairments were assessed with standardized instruments of the Mini-Mental State Examination (MMSE), Hyogo Activities of Daily Living Scale (HADLS), Neuropsychiatric Inventory (NPI), respectively. We annually sent a questionnaire to the caregivers to collect information on the patients' status. It included questions whether and when they died or were institutionalized and whether they had used formal social supports such as home care, day care, and respite care services. MAIN OUTCOME MEASURE: Time to death or institutionalization. RESULTS: One-hundred and fifty subjects were followed for at least one year and 51 of them met either end point. The Cox proportional hazard model demonstrated that the baseline caregiver burden was a significant predictor of the end point even after controlling possible confounders. Among these, the use of day care and home care services during the course were significant protective factors. The baseline cognitive and functional disturbances but not neuropsychiatric manifestations were significantly associated with the end point. CONCLUSIONS: The caregiver burden is a significant predictor for the death or institutionalization of the patients with AD. The caregiver education which decrease the caregiver burden and prompt the usage of the social care services are necessary to protect premature institutionalization.     

The indirect effect of positive aspects of caregiving on the relationship between cognitive decline and dementia caregiver burden

Background

Research has linked increased cognitive decline in a dementia care recipient to worsening caregiver burden, but the presence of positive aspects of caregiving is associated with better outcomes. As cognitive decline worsens, a lack of positive caregiving experiences could lead to burden for the caregiver. This study investigated relationships among dementia caregiver burden, cognitive decline, and positive aspects of caregiving in dementia, predicting an indirect effect of positive aspects of caregiving.

Methods

Data from 724 patients of an outpatient memory clinic in Ohio were examined and dyads included based on clinically supported patient diagnoses on the dementia spectrum. Caregivers completed the Zarit Burden Interview (ZBI) and Positive Aspects of Caregiving (PAC) measures. The Montreal Cognitive Assessment and Mini-Mental State Examination were used to estimate cognitive decline, standardized to create a single variable. Multiple potential covariates were considered for inclusion in the model. A cross-sectional mediation analysis using the Hayes PROCESS macro explored the presence of an indirect effect of PAC on the relationship between cognitive decline and ZBI using 5000 bootstrap samples.

Results

Only the potential covariate caregiver age was correlated with any of the primary variables; this variable was controlled in analyses. Significant relationships emerged between cognitive decline and ZBI (r = −0.12, P < 0.001), between PAC and ZBI (r = −0.23, P < 0.001), and between cognitive decline and PAC (r = −0.07, P < 0.05). An indirect effect of positive aspects of caregiving on the relationship between cognitive decline and ZBI was statistically significant (B = 0.0092, 95% bias-corrected confidence interval: 0.0008, 0.0185), accounting for 14.4% of the variance in the model.

Conclusions

A lack of positive aspects of caregiving could be partially responsible for development of dementia caregiver burden as cognitive decline worsens. Longitudinal examination of these relationships is needed to understand causality fully. Findings may help healthcare providers tailor treatment to alleviate caregiver burden.