Burden felt by family caring for the elderly members needing care in southern Japan

The objective of this study was to adapt the Japanese version of the Zarit Caregiver Burden Interview (ZBI) in a different sample in Japan for cross-validation; and to investigate significant correlates of heavy caregiver burden. A questionnaire survey was used and patients' examination of 45 pairs of caregivers and 'the elderly in need of care' (Yokaigo rojin) who received regular nurse visits from a practice nurse clinic, which was located in Onga County, in southern Japan.The Japanese version of the ZBI had high internal consistency when applied to a different sample in Japan. A logistic regression analysis revealed the following findings. First, those who looked after the elderly in need of care with more than two behavioral disturbances were more likely to feel 'heavier' caregiver burden (OR = 4.75, CI = 1.45-15.54, p = 0.01). Second, those who looked after the the elderly in need of care with totally dependent ADL felt less caregiver burden than those looking after the elderly who were partially limited in ADL (OR = 0.40, CI = 0.16-0.98, p = 0.04). In conclusion, the Japanese ZBI was cross-validated in a different sample in Japan; and partial limitations in ADL and behavioral disturbances are found to be risk factors for caregivers' feelings of heavy burden.     

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.     

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.     

Reliability and validity of the subjective burden scale in family caregivers of elderly relatives with dementia

The reliability and validity of the Subjective Burden Scale (SBS) were investigated in 255 Japanese family caregivers of elderly relatives with dementia. Values of the Cronbach's alpha reliability, split-half reliability (r), and test-retest reliability (r) were .87, .80, and .72, respectively. The SBS score was significantly positively correlated with the degree of mental health, which was assessed with the Japanese version of the 60-item General Health Questionnaire (r = .41). The family caregivers who gave up the caregiving of their relatives showed significantly higher SBS scores than those who did not. The SBS scores for caregivers indicated satisfactory predictive validity both in the degree of their mental health and in the prospects of family caregiving about 6 months later. These findings suggest that the SBS is adequately reliable and valid and can be used to assess the subjective burden of Japanese caregivers.     

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.     

Reliability generalization of responses by care providers to the Zarit Burden Interview

The Zarit Burden Interview (ZBI) is believed to be the most commonly used measure of caregiver burden. Originally developed more than 20 years ago for use with informal caregivers of community dwelling persons with Alzheimer disease, it has subsequently been administered to a diverse range of patient populations, formal or paid caregivers, and translated into numerous languages. Given that the ZBI is now used more broadly than it was initially intended and first validated, the current study applies the reliability generalization meta-analytic procedure to examine the psychometric properties of responses to the ZBI across populations. Multiple regression with categorical variables was performed to identify factors associated with error variance in ZBI reliability estimates (N=138 data points). Number of items, residence of the care recipient (community) and the Hebrew version each contributed significantly to prediction of internal consistency. These differences, however, were found to be relatively small and within accepted parameters. Generally, responses to the ZBI appear reliable across populations of caregivers and patients. Only versions of the ZBI with more or less than 22-items (nonstandard formats) reflect both statistical and meaningful differences in reliability. Where feasible, it is recommended that the 22-item version of the ZBI be used in future research and clinical practice.     

Determinants of the quality of life in Alzheimer's disease patients as assessed by the Japanese version of the Quality of Life-Alzheimer's disease scale

BACKGROUND: Although QOL is an important indicator to assess multiple facets of life, the QOL of Alzheimer's disease (AD) subjects with impaired cognitive ability due to dementia has not yet been fully investigated. In this study, we developed the Japanese version of the Quality of Life-Alzheimer's disease (QOL-AD) scale by means of back-translation, and ascertained its reliability and validity for evaluating the quality of life in AD subjects. We also hypothesized that the presence of neuropsychiatric symptoms may determine the characteristics and determinants of both the patients' and the caregivers' responses to the patients' QOL questionnaire. METHODS: We administered the QOL-AD questionnaire to subjects with mild or moderate AD (n = 140). The test-retest reliability was evaluated by the same interviewer after a month's interval. Data from the following tests were also collected to ascertain the validity of the questionnaire: Short Memory Questionnaire (SMQ), Neuropsychiatry Inventory (NPI), Hyogo Activities of Daily Living Scale (HADL) and Mini-Mental State Examination (MMSE). RESULTS: The Japanese version of the QOL-AD questionnaire demonstrated good internal reliability for both the patients' (Cronbach's alpha = 0.84) and the caregivers' responses (Cronbach's alpha = 0.82) and good test-retest reliability for both the patients' (intraclass correlation coefficient = 0.84) and caregivers' reports (intraclass correlation coefficient = 0.91). The concordance between the patients' self-report and the caregivers' observation was moderate (Pearson correlation coefficient = 0.60). The score for the 'mood factor' (apathy, depression/dysphoria) in NPI predicted the overall QOL score as determined from both the patients' and the caregivers' responses for subjects with mild (MMSE>or=21, n = 88) and moderate (MMSE< 21, n = 52) AD. The score for the 'psychosis factor' (delusions, hallucinations, anxiety, agitation, disinhibition, irritability, aberrant motor activity) in NPI predicted the total QOL score as determined by the patients and the caregivers among subjects with moderate AD only. CONCLUSIONS: As hypothesized, the presence of neuropsychiatric symptoms may be an important predictor of both the patients' and caregivers' responses to the patients' QOL questionnaire. QOL-AD appears to be a promising measure of the QOL of subjects with mild to moderate AD in Japan.     

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.     

Depression and associated factors of informal caregivers versus professional caregivers of demented patients

To examine the differences in depressive state and associated factors between informal and professional caregivers, a cross-sectional study was carried out in 23 informal home-based caregivers of demented patients, 24 professional caregivers working in the dementia ward of a psychiatric hospital, and 31 controls. Measurements included severity of dementia (Clinical Dementia Rating Scale, Mini Mental State Examination, MMSE) and levels of caregivers depression (Beck Depression Inventory; BDI), care burden (Zarit Caregiver Burden Interview; ZBI) and quality of life (World Health Organization-Quality of Life-26, WHO-QOL26). Informal caregivers had the highest BDI score and ZBI and the lowest QOL among the three studied groups. Regarding informal caregivers, there was a strong positive correlation between BDI and ZBI scores. The BDI and ZBI scores were significantly high when patients exhibited behavioral problems. The four WHO-QOL categories (physical domain, psychological domain, social relationships and environment) had a strong negative correlation with BDI. Regression analysis demonstrated that the psychological domain points of WHO-QOL, role strain factor of ZBI and MMSE score were significantly associated with BDI. Regarding professional caregivers, their BDI score had a strong negative correlation with the physical and psychological domains and environment categories of WHO-QOL. Regression analysis demonstrated that their BDI score was significantly associated with the psychological domain and environment. It is thus very important to provide sufficient social care services and/or personal support to informal caregivers.     

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.