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

Authors

  • Yumiko ARAI

    1. Department of Gerontological Policy, National Institute for Longevity Sciences (NILS), National Center for Geriatrics and Gerontology (NCGG), Aichi, Japan
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Dr Yumiko Arai MD PhD MPH MA, Departmental Head, Department of Gerontological Policy, National Institute for Longevity Sciences (NILS), National Center for Geriatrics and Gerontology (NCGG), 36-3 Gengo Morioka-cho, Obu-shi, Aichi 474-8522, Japan. Email: yarai@nils.go.jp

Abstract

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).

INTRODUCTION

An increase in the number of impaired elderly people and a concomitant decrease in the capacity of informal care (partly due to the increasing development of the nuclear family and more career-oriented women) have now made caregivers’ burden a social issue not only in Japan but also in many developed countries. In Japan for example, in a survey conducted by Arai et al. targeting a general population of 2224 people, 70% gave as the second reason for not wanting to live long their wish not to be a burden to their own family members.1,2 And when asked what they would feel if diagnosed with dementia, approximately 70% stated they would feel embarrassed to become a burden to their family.1,3

It was Professor Steven Zarit of Pennsylvania State University who first proposed an operational definition of caregiver burden as the extent to which caregivers perceived their emotional or physical health, social life and financial status as suffering as a result of caring for their relative. He then developed an assessment tool for the feelings of caregiver burden based on the above definition, the Zarit Burden Interview (ZBI).4,5 The ZBI is now the instrument most widely used in North America and Europe for assessing the burden experienced by family caregivers who look after the community-residing impaired elderly.

Arai et al. developed a Japanese version of this assessment scheme, called J-ZBI,6 which is currently the most widely used assessment tool for caregiver burden in Japan.

This review outlines the findings of 22 studies conducted between 1997 and 2005 by Arai and 19 collaborators regarding caregiver burden and assessments of the quality of home care for the elderly.

Cross-sectional studies on caregiver burden

A study was conducted using the J-ZBI in Japan prior to the implementation of the Long-Term Care (LTC) insurance scheme in order to identify the factors related to the feelings of burden experienced by family caregivers who looked after the impaired elderly. As in previous studies in North America and Europe, it was found that behavioral and psychological symptoms of dementia (BPSD) and behavioral disturbances of the disabled elderly were strongly correlated to feelings of caregiver burden (odds ratio = 4.75, 95% confidence interval = 1.45–15.54, P = 0.01).7 The above findings did not differ after the LTC insurance scheme was implemented; BPSD have remained a strong correlate of the feelings of caregiver burden (odds ratio = 7.16, 95% confidence interval = 1.48–34.70, P = 0.01).8 We also found that the subscore of health-related quality of life (HRQOL) with respect to mental health and satisfaction with verbal communication was a factor influencing caregiver burden.9

Subsequently, Schreiner et al. found that a cutoff score ranging from 24 to 26 has significant predictive validity for identifying caregivers at risk for depression.10 A J-ZBI cutoff of 24 correctly identified 72% of caregivers with probable depression.10

In addition, a qualitative study was conducted in order to elucidate the caregiver burden and problems associated with the care of patients with frontotemporal dementia (FTD) in home-care settings. Behavioral symptoms peculiar to FTD were found to pose huge problems and a heavy burden to the family caregiver. The conclusion was that more resources should be allocated to meet the specific needs of FTD patients and their families.11

Changes in caregiver burden

Arai et al. conducted a survey every year from 1998 through 2001 targeting all disabled elderly and their principal caregivers residing in Matsuyama Town located in rural northern Japan. The design of this Matsuyama Caregiver study has been described in detail elsewhere.12,13

As a part of the study, a longitudinal analysis was conducted between October 1998 and October 2000 in an attempt to determine how caregiver burden may have changed before and after the implementation of the LTC insurance scheme. It was found that the number of services used in 2000 was significantly greater than in 1998. However, caregiver burden itself did not change from 1998 to 2000, the first year in which the new system was in place.14 A similar analysis was then undertaken to compare caregiver burden between 1999 and 2001; there was no significant difference between the mean J-ZBI scores in 1999 and 2001.15 Overall, these longitudinal studies showed that the degree of caregiver burden did not change among the caregivers who had been continuously providing care prior to the launch of the LTC insurance scheme.

Comparisons were also made between caregivers of the disabled elderly in 1999 and those entrusted with their care in 2001 in terms of their degree of caregiver burden by analysis of co-variance (ancova), adjusting for other variables. As shown in Figure 1, the adjusted J-ZBI mean score in 2001 was not significantly different from that in 1999, indicating that feelings of burden among caregivers did not change after the implementation of the LTC insurance scheme.15

Figure 1.

Comparisons of J-ZBI score between caregivers who looked after the disabled elderly in 1999 and those who started to look after the disabled elderly in 2001. Adjusted by caregivers’ age, caregivers’ sex (female = 1), age of disabled elderly, duration of caregiving (months), number of family members, ADL score (Barthel Index), score of behavioral disturbances (TBS).

Appropriateness of the Long-Term Care insurance assessment scheme

In the LTC insurance scheme, services are allocated based on the Government-certified Disability Index (GCDI) (Yokaigodo).16 We were concerned at the time whether the LTC insurance scheme in Japan had indeed developed a fair and appropriate way of allocating resources to the nation’s disabled elderly population, especially those with dementia. Specifically, we investigated whether the GCDI scores under the LTC insurance scheme adequately reflected the needs of people with dementia of Alzheimer’s type (DAT) and vascular-type dementia (VD).17 In fact, the GCDI score among DAT patients proved to be lower than among VD patients (Fig. 2), indicating that DAT patients were classified as ‘less disabled’ on their GCDI than VD patients. Since the amount of care services patients were allowed to use under the existing LTC insurance plan was determined solely by the GCDI score, it appeared that the people with DAT in the study were allowed fewer care services despite the fact that the severity of their dementia was the same as for VD patients.

Figure 2.

Government-certified Disability Index (GCDI) (Yokaigodo) and severity in dementia of Alzheimer’s type (DAT) and vascular-type dementia (VD) patients.

Caregivers’ attitudes towards caregiving

The LTC scheme has demonstrably changed the attitudes of caregivers. More caregivers came to believe that society must look after the elderly after only one year under the new program.18 In the short space of a year, there was an obvious shift from the idea that the care of old folks falls to the family to the virtually unheard-of notion that society must shoulder the problems of the world’s fastest-graying population.19

Development of short Japanese version of Zarit Caregiver Burden Interview: its reliability and validity

Under the new LTC insurance system, it became even more important to monitor the wellbeing of not only the impaired elderly but also the family caregivers. To facilitate the assessment of family caregiver burden in clinical settings, Arai et al. proposed a short version of the J-ZBI, consisting of the following two factors: personal strain (five items) and role strain (three items).20 These eight items are presented in Table 1. It was demonstrated that the newly proposed short version, J-ZBI_8, had high reliability, concurrent validity and construct validity. Subsequently, Kumamoto et al. conducted a cross validation study.21,22 Overall, the J-ZBI_8 produced results comparable to those of the full version, i.e., the J-ZBI. The shorter yet no less reliable and valid eight-item version would thus mean easier administration of the instrument for assessing family caregiver burden in clinical settings.

Table 1.  The short Japanese version of the Zarit Caregiver Burden Interview (J-ZBI_8)20–22
  1. Notes: bsl00106 J-ZBI_8 Personal Strain; ▵ J-ZBI_8 Role Strain.

bsl00106 1. Do you feel embarrassed over your relative’s behavior?
  0. Never 1. Rarely 2. Sometimes 3. Quite frequently 4. Nearly always
bsl00106 2. Do you feel angry when you are around your relative?
  0. Never 1. Rarely 2. Sometimes 3. Quite frequently 4. Nearly always
▵ 3. Do you feel that your relative currently affects your relationship with other family members or friends in a negative way?
  0. Never 1. Rarely 2. Sometimes 3. Quite frequently 4. Nearly always
bsl00106 4. Do you feel strained when you are around your relative?
  0. Never 1. Rarely 2. Sometimes 3. Quite frequently 4. Nearly always
▵ 5. Do you feel that your social life has suffered because you are caring for your relative?
  0. Never 1. Rarely 2. Sometimes 3. Quite frequently 4. Nearly always
▵ 6. Do you feel uncomfortable about having friends over because of your relative?
  0. Never 1. Rarely 2. Sometimes 3. Quite frequently 4. Nearly always
bsl00106 7. Do you wish you could just leave the care of your relative to someone else?
  0. Never 1. Rarely 2. Sometimes 3. Quite frequently 4. Nearly always
bsl00106 8. Do you feel uncertain about what to do about your relative?
  0. Never 1. Rarely 2. Sometimes 3. Quite frequently 4. Nearly always

Effectiveness of service use on reducing caregiver burden

Since relatively few observational studies had been conducted on the impact of home-care services on burden or other aspects of the caregiver’s experience, a new study by Kumamoto et al.23 then sought to examine whether the use of care services reduces the feelings of burden among family caregivers in Japan. The specific aims were to test three hypotheses: (i) that severity of impairment and dementia among the disabled elderly increases the feelings of burden among family caregivers and that support from family members decreases burden; (ii) that the amount of services used by older people and their caregivers is affected by the severity of dementia and ADL deficiencies among the disabled elderly and the amount of support from family members; and (iii) that controlling for severity, the use of care services under the LTC insurance program serves to reduce feelings of burden among family caregivers.

A structural equation model was developed using the data obtained from 82 pairs of community-dwelling disabled elderly and their principal family caregivers. The model included the following variables: age of the disabled elderly; the severity of ADL deficiency and behavioral disturbances; use of formal (public) care services; support from family members; and feelings of burden among family caregivers.23 The structural equation model revealed that, after controlling for the effects of severity on service use, home-care services effectively reduce feelings of burden among family caregivers.

These findings suggested that care services provided under the LTC insurance scheme had been successfully reducing burden among family caregivers. The next issue was whether the quality of home care is related to caregiver burden. However, there was no objective tool for assessing quality of home care. Thus, Arai et al. launched a study with the specific aim to develop an assessment tool for home care.24,25

Development of a Home Care Quality Assessment Index (HCQAI)

The aim of this study was to develop a Home Care Quality Assessment Index (HCQAI) that may be used for overall assessment of home care in three areas: (i) conditions of the impaired elderly (outcome); (ii) caregiver and caregiving situation (process); and (iii) the home care environment (input).

To develop the HCQAI, a list of items for assessment was drawn up, and the reliability of each item was verified using (a) test–retest reliability; and (b) inter-rater reliability. Impaired elderly and their family caregivers who used the visiting nurse station of the Okazaki Medical Association were surveyed. A κ coefficient of 0.4 or greater generally served as the inclusion criteria for test–retest and inter-rater reliability of each item. A factor analysis was then conducted for items satisfying the above criteria, using 10 scales.

As a result, Cronbach’s α showing internal consistency (reliability) for these scales was 0.6–0.9. Two scales corresponded to care within the home: the ‘barrier-free’ and ‘improvement of water facilities’; three to the caregiver situation: ‘dressing appropriately for the season’, ‘mistreatment towards the elderly’ and ‘hygiene and assistance’; and five involved conditions of the impaired elderly: ‘cognition’, ‘paralysis’, ‘vision and hearing’, ‘ADL’ and ‘gross motor.’ The HCQAI developed in the study, consisted of 41 items, and could assess the quality of home care both objectively and comprehensively, based on professional staff observation (Fig. 3).24,25 Few indexes of this kind exist worldwide to scientifically assess input, process and outcome in the delivery of quality home care for the impaired elderly.

Figure 3.

Subscales of Home Care Quality Assessment Index (HCQAI).

It is hoped that this review briefly outlining recent studies relating to family care burden and home care quality under the LTC insurance scheme will familiarize the reader with some of the present and past issues in this fast-changing field.

ACKNOWLEDGMENTS

The author gratefully acknowledges the immense contribution of her collaborators in the original studies upon which this brief review is based. The studies outlined here were in part supported by: grants for Comprehensive Research on Aging and Health (No. H11-036, No. H15-025, No. H17-029) provided by the Ministry of Health, Labor and Welfare, Japan; a grant provided by the Ministry of Education, Culture, Sports Science and Technology of Japan (Grant no. 14570375); and also a grant from the Uehara Memorial Foundation. The author is also grateful to Ms Yoko Mizuno for her editorial assistance.

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