Are there inequities in the assessment of dementia under Japan's LTC insurance system?

BACKGROUND: Just two years after its inception, Japan's Long-term Care (LTC) insurance system is facing considerable criticism about whether or not it has developed a fair and appropriate way of allocating resources to the nation's disabled elderly population, especially those people with dementia. OBJECTIVE: The present study has investigated: (i) the relation of the Government-Certified Disability Index (GCDI) of the LTC insurance system to characteristics of people with dementia and their family caregivers; and (ii) whether the GCDI scores adequately reflect needs of people with DAT (dementia of Alzheimer's type) and VD (vascular-type dementia). METHODS: Subjects were assessed on their visits to outpatient clinics for their Activities of Daily Living (ADL), behavioural disturbances, MMSE, GCDI, service utilization and caregiver burden. Correlation analyses were conducted to examine the relationships among these variables, which were subsequently compared between the DAT and VD patients. RESULTS AND CONCLUSIONS: The GCDI was found to be associated with patients' ADLs and MMSE scores, and not with behavioural disturbances or caregiver burden. Compared to VD patients, people with DAT tended to have more behavioural disturbances but better ADL functioning. As a result, DAT patients were classified as 'less disabled' on their GCDI than VD patients, even though their caregivers felt as much burden as the caregivers of VD patients. These results show that the GCDI probably underestimates the impact of behaviour problems. Suggestions are made for a more balanced assessment of demented patients that is more consistent with their needs.     

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.     

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.     

Gender of demented patients and specific family relationship of caregiver to patients influence mental fatigue and burdens on relatives as caregivers.

OBJECTIVES: To survey the burden and psychological problems of family caregivers of demented people. DESIGN: All scores were compared according to gender of the demented patients and which family members were the caregivers. SETTING: Outpatients clinic at the university hospital and the day service system for the elderly. PATIENTS: Sixty-two demented patients living at home and family members acting as caregivers. MEASURES: Cognitive function, activities of daily living (ADL) and behaviour of demented patients were rated using the Hasegawa scale, the ADL scale and the dementia behaviour disturbance (DBD) scale. Caregiver's burden and mental fatigue were rated using a burden scale and a general health questionnaire (GHQ). RESULTS: Caregiver burden correlated negatively with the Hasegawa score and positively with the GHQ and DBD scores. Caregiver burden, GHQ and DBD for male patients were significantly higher than for females. Little difference was evident for caregiver burden scale or patient DBD between spouses and offspring as caregiver, but the GHQ score for spouses was significantly worse than that for offspring. CONCLUSIONS: The difficulty of caregivers in supporting the daily life of demented family members correlated with patients' cognitive impairment, abnormal behaviour and ADL status, and caregivers' difficulty resulted in mental fatigue. Caregivers' relative isolation from friends, attributable to their caregiving responsibility, did not correlate with the demented person's cognitive impairment or ADL status.     

Caregiver psychological characteristics predict discontinuation of care for disabled elderly at home

OBJECTIVE: This study sought to determine the predictors of discontinuation of care for the disabled elderly at home using multivariate regression analysis. METHODS: In January to February 2005, using a self-administered questionnaire, data were collected from 193 caregivers of frail elderly listed on a roster for utilization of day service or short stay service from two Home Visit Nursing Care Stations. Family caregivers were defined as co-resident family members who provided a minimum of 1 h of daily care for at least 3 months. Multiple stepwise logistic regression analysis was performed to detect predictors of a discontinuation for the disabled elderly at home. RESULTS: The mean age of caregivers was around 59.0 years, accounting for about 80% of the women among caregivers. Of those caregivers, the proportion of desire to institutionalization (high DI) (56.8%) was higher than that of desire to care at home (low DI) (43.2%). Among the following three factors selected by multivariate stepwise logistic regression analysis, the strength of the relationship was stronger in frequent mood swings and irritability as carerecipient characteristic (adjusted OR = 5.93; 95% CI, 2.09-16.8) than in no advanced or skilled care (adjusted OR = 3.13; 95% CI, 1.41-7.14) and a high caregiver burden (adjusted OR = 1.12; 95% CI, 1.03-1.23) as caregiver's one. CONCLUSIONS: Our results suggest that the carerecipients' psychological characteristics may be more strongly related to the decision to continue care for disabled elderly at home than that of the caregivers'.     

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.     

Elders with dementia living in the community with and without caregivers: an epidemiological study.

BACKGROUND: Previous studies of dementia and family caregiving have focused on individuals seeking diagnosis and treatment, and have rarely been conducted in representative community samples. Identifying demented individuals participating in a community survey, we determined (a) the factors associated with demented elderly living alone; (b) the factors associated with the demented elderly having caregivers; (c) the factors associated with increased levels of burden among caregivers of persons with dementia. POPULATION AND METHODS: During an epidemiological survey of a mostly rural U.S. community, the authors identified 116 noninstitutionalized elderly individuals with dementia. These individuals were classified into those living alone and those living with others; both groups were further classified into those with and without identifiable family caregivers. Characteristics of both caregivers and care recipients were examined. RESULTS: Approximately a third of the subjects with dementia lived alone, and only half of them had caregivers. The average age of the caregivers was 67.4 years, and 73% of them were women. Almost half of the caregivers were spouses, whereas almost a third were offspring, of the demented individuals. Over two thirds of caregivers lived with the subjects. Female caregivers were significantly younger than male caregivers. Multivariate analyses revealed that subjects with dementia who were living alone were independently and significantly more likely to be women and to have dementias of shorter duration, lesser severity, and lesser functional impairment than those living with others. Demented subjects with caregivers were more likely to have greater dementia severity, functional impairment, and cognitive impairment and more current cognitive and behavioral symptoms than those without caregivers. Demented subjects whose caregivers reported higher levels of burden were more likely to be women and to have greater dementia severity, functional impairment, and cognitive impairment and more current symptoms than those whose caregivers had no/minimal burden. CONCLUSIONS: These results draw attention to the problems of persons with dementia living alone, particularly those without caregivers. Our data also provide epidemiological confirmation of previous clinical/volunteer studies of dementia caregiving, as well as a preliminary assessment of need in the community at large. Living arrangements and caregiver issues should be taken into account when planning services for the elderly.     

Exploring strategies to alleviate caregiver burden: Effects of the National Long‐Term Care insurance scheme in Japan

The ever‐increasing population of older people with disabilities, including dementia, has been accompanied by a corresponding growth in the number of family caregivers, who are themselves at risk of developing mental and physical health problems. As a result, the need for practical and effective approaches for alleviating caregiver burden has become a major public health concern. One approach involves the development of public policy initiatives to allow the caregiver burden to be borne partly by society as a whole, rather than falling solely on individuals. In 2000, Japan introduced a National Long‐Term Care (LTC) insurance scheme that requires adults over the age of 40 years to pay compulsory monthly premiums, with one aim of the program being to reduce caregiver burden. The present paper reviews the effects of this scheme on caregivers' and the general public's perception of caregiver burden and assesses what other measures are needed to further reduce and/or prevent burden. Drawing on recent studies, four questions are addressed: (i) have caregivers' attitudes towards caregiving changed since the implementation of the scheme; (ii) do services provided under the scheme alleviate caregiver burden; (iii) what are the general public's attitudes to and understanding of family caregiving; and (iv) what is the general public's level of understanding of dementia? Results from recent studies suggest that the LTC insurance scheme in Japan appears to be an effective measure for alleviating the burden of caregiving among current family caregivers, but larger studies are needed to determine overall effectiveness.     

Perceptions of the process of care among caregivers and care recipients in dementia care networks

The Dementia Care Networks Study investigated 4 community-based, not-for-profit dementia care networks in Ontario, Canada. Investigators examined whether sociodemographic and health characteristics, type of support network, and amount of service use among care recipients and caregivers (n = 267 dyads) were associated with experiences with care processes. The process-of-care constructs were: family physicians' awareness of services; experiences with health care workers, and assessment and placement activities. The findings highlighted that family physicians' understanding of dementia and their ability to work with the dyad to become aware of and accept services, was an important component in the dyad's satisfaction. If caregivers received home support and the care recipients received emotional support from their social support network, they were more likely to be satisfied with their experiences with health care workers. In summary, increased awareness and provision of services were associated with more positive perceptions of network effectiveness.     

Subjective Burden of Caregivers of Demented Patients: Effects of Coping and Family Adaptability

Abstract: I tested a hypothesis that coping strategies with psychological stresses in home care and a cognition of family adaptability are associated with a subjective burden based on 31 family caregivers of patients with dementia. Caregivers who gave up home care felt a significantly higher burden and used more confrontative coping than those who did not. The caregivers, who recognized the family system as flexible, felt less burden than those who did as rigid. This study suggested that the subjective burden of caregivers of demented patients accounted for not only by the severity of dementia of patients but also by the confrontative coping and cognition of family system of the caregivers.     

Aging parents as caregivers of mentally ill adult children: an emerging social problem

More than one-third of long-term mentally ill adults live with their families, most with aging parents, a situation that accentuates the need for residential alternatives to home care for deinstitutionalized patients who will out-live their caregivers. The role of parenting mentally disabled adults may also impose undue stress on elderly persons. Objective and subjective parental burden, including fears for the patient's future, are increased by the mental health system's failure to offer education, support, training in problem solving, and a collaborative role in discharge planning to family members. Social policy implications of considering families as primary caregivers include the danger that government will be relieved of responsibility for care of the mentally ill, the creation of a potentially at-risk population among aging parents and other family members affected by the stresses of caregiving, and the reduction of the patient's potential for independent living.     

Migrant care workers as protective factor against caregiver burden: results from a longitudinal analysis of the EUROFAMCARE study in Italy

Objective: The aim of the analysis is to assess the impact of privately employed migrant care workers (MCWs) on the burden of Italian family members who care for a disabled older person.

Methods: EUROFAMCARE is a one-year prospective survey carried out to provide evidence on the availability and use of support services by family carers of older people in Europe. In Italy, 990 family caregivers were enrolled and successful follow-ups were completed for 863 subjects. The survey also assessed the level of caregiver burden using the COPE index, which has three sub-sections: ‘Positive Value’ (PV), ‘Quality of Support’ (QS) and ‘Negative Impact’ (NI). We used the one-year change of the COPE-NI as dependent variable and we realised multilevel regression models to estimate the longitudinal predictors of caregivers’ burden increase.

Results: At a cross-sectional level, most burdened caregivers are those caring for a demented relative (COPE-NI = 13.6), with no educational title (14.5) and looking after their own spouses (15.1). Longitudinally those employing an MCW are significantly protected against burden increase (regression coefficient: ?1.52; p < 0.01) while those who cannot rely on the support of other family members are exposed to the risk of burden increase (0.991; p < 0.05). Other formal services do not have any protective effect.

Conclusion: Our study suggests that employing an MCW, rather than using formal services, is associated with a reduction of caregiving burden. Further research should assess whether the shift in care responsibilities to the MCWs also implies a transfer of care burden, and understand how these workers can be better supported by existing formal services.     

Assessing the impact of neuropsychiatric symptoms on distress in professional caregivers

Caregiver burden has been studied extensively in family caregivers of Alzheimer's patients. Behavioral disturbances have been widely reported to be a source of distress and burden for family caregivers. However, the study of the effects of behavioral disturbance on distress for professional caregivers in long-term care facilities has been relatively ignored. This study was conducted to evaluate the effects of neuropsychiatric symptoms among patients with dementia on distress in nursing home caregivers. One hundred and five professional caregiver interviews were done in order to assess distress related to the frequency and severity of neuropsychiatric symptoms in one 125-bed proprietary nursing home staffed according to industry standards. Twelve licensed vocational nurses (LVNs) and 12 certified nurses aids (CNAs) were interviewed regarding 69 nursing home residents using the Neuropsychiatric Inventory-Nursing Home Version (NPI-NH). Agitation and apathy were found to be the two most distressing behaviors for both the LVNs and CNAs, but while the level of distress for the LVNs approaches that reported by family members in other published research, the CNAs report very little overall distress. In summary, professional caregiver distress appears to be a significant problem in LVN caregivers in long-term care settings.     

Feelings of burden and health-related quality of life among family caregivers looking after the impaired elderly

The aim of the present study was to examine the relationship between feelings of burden and health-related quality of life (HRQOL) among family caregivers looking after the impaired elderly residing in a community located in southern Japan. Subjects were 85 pairs comprising elderly individuals requiring care and their respective family caregivers. Questionnaire items for the family caregivers related to demographic variables, caregivers' burden, HRQOL, use of public services, hours spent caregiving, duration of caregiving, and satisfaction with verbal communication with family. Questionnaire items for the elderly recipients of care concerned demographic variables, activities of daily living, and cognitive status. According to bivariate analysis, caregivers' burden was significantly related to cognitive status, hours spent caregiving, and each HRQOL subscore except physical function. From multiple regression analysis, subscore of HRQOL with respect to mental health and satisfaction with verbal communication were extracted as influential factors. Final regression coefficient was 0.72 (P<0.01) and coefficient of determination was 0.53. These results suggest that satisfactory mental health status plays an important role in limiting family caregivers' burden.     

Supporting the dementia family caregiver: The effect of home care intervention on general well-being

Objectives: Although high volumes of literature have been written on interventions in dementia home care, only a poor efficiency has been proved. Nevertheless, caregivers often express strong feelings of satisfaction about the proposed support. In this meta-analytic review, a quantitative analysis of the effect of the different types of professional dementia home care interventions was made.

Method: A systematic literature search, covering the years 1980 until 2007, was performed using Medline, Embase, Cochrane DSR, Dare, CCTR, and ACP Journal Club). Limitations on publication type were determined as randomized controlled trial and controlled trial.

Results: Psychosocial intervention in dementia home care was found to be beneficial in a non-significant way on caregivers’ burden. An almost negligible decrease in depression was found in the psychosocial intervention arm while multidisciplinary case management contributed to a larger though insignificant decrease of depression in caregivers. Respite care was responsible for an increase in burden.

Conclusion: This review demonstrated, in accordance with other qualitative reviews, the weak evidence that supporting family caregivers could be beneficial. Although the rather small benefits of formal support, supporting family caregivers is an indispensable issue in dementia home care. Professional caregivers should keep in mind that family caregivers highly appreciate the intervention and that they feel less burdened or depressed in the short time follow up but that premature home care remains more rule than exception.     

Depression among caregivers of patients with dementia: Associative factors and management approaches

As elderly people increasingly come to represent a higher proportion of the world’s population, various forms of dementia are becoming a significant chronic disease burden. The World Health Organization emphasizes dementia care as a public health priority and calls for more support for family caregivers who commonly play a significant, central role in dementia care. Taking care of someone with dementia is a long-term responsibility that can be stressful and may lead to depression among family caregivers. Depression and related behavioral and cognitive changes among caregivers could in turn affect the status and prognosis of the dementia patient. This review article explores depression in dementia caregivers and summarizes proposed mechanisms, associated factors, management and research findings, and proposes future research directions.     

Why do patients and their families not use services for dementia? Perspectives from a developed Asian country

ABSTRACT Background: Despite the need for community services to support the intensive levels of care provided by dementia family caregivers, findings consistently indicate low rates of service utilization. This study aims to explore the extent of service use and examine the factors that may influence the use of services in a sample of family caregivers of Persons With Dementia (PWD). Methods: Two hundred and seventy-two family caregivers completed a questionnaire assessing caregiver burden, knowledge and use of services, dementia severity, frequency of problem behaviors and socio-demographic characteristics. Results: The rate of service use was modest with 39.9% using any of the available services. Reasons for non-use included lack of time (26.2%), perceived lack of need (18.5%), and presence of domestic help (21%). Separate regression models were evaluated to identify factors associated with caregiver service use and PWD service-use. Caregiver employment status (OR = 0.53, CI = 0.30-0.94) and knowledge of available services (OR = 4.22, CI = 2.23-7.98) contributed significantly to the model distinguishing caregiver service users from non-users. Knowledge of available services (OR = 2.14, CI = 1.23-3.71) was the only significant predictor of service use targeted at the PWD. Conclusions: Given that knowledge significantly increased the odds of service use, strategies should be designed to raise awareness about the availability of dementia support services in the community and provide a deeper understanding about the value of such services. Future research should employ larger sample sizes and explore factors not measured in this study that might potentially better explain use of services.     

Family functioning in the caregivers of patients with dementia

BACKGROUND: Caregiver burden has been extensively studied in the dementia population. The marital relationship has been suggested as a mediational model through which variables influence the caregiver and contribute to the experience of burden or reward. OBJECTIVES: This study examines family functioning, caregiver burden and reward and quality of life in 38 family members caring for a relative with dementia. METHODS: Caregivers of out-patients with dementia completed self report questionnaires. RESULTS: 63% of caregivers were female with a mean age of 62 years. Patient mean age was 73 years. The average number of caregiving years was 3.1. Caregivers were more likely to be spouses (61%) than children (29%) or other relatives (11%). Despite the fact that caregivers reported that their relatives were moderately disabled, they perceived more reward than burden. Caregivers who reported poor family functioning had higher ratings of strain and burden. Family functioning in these caregivers was poorest in the dimensions of affective responsiveness, problem solving and communication but it was also impaired in roles and affective involvement. CONCLUSIONS: Assessing a family's functioning may be an important factor in the care of the dementia patient and his/her family.     

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.