Humanistic burden among caregivers of patients with Alzheimer’s disease or dementia in Japan: a large-scale cross-sectional survey

Abstract

Aims: As the population in Japan is rapidly aging, the prevalence of dementia, particularly Alzheimer's Disease (AD), is expected to increase, resulting in a growing need for caregivers. This study aims to quantify and compare the humanistic burden of caregivers of AD/dementia patients with caregivers of patients with other conditions in Japan. Materials and methods: This cross-sectional study used data from the 2018 Japan National Health and Wellness Survey (NHWS). Outcome measures included the Short-Form 12-item Health Survey (SF-12) for health-related quality-of-life (HRQoL), EuroQol 5-dimension scale (EQ-5D) for health states utilities, impact of health on productivity and activity, and evaluation of depression and anxiety. Multivariate analysis was used to compare across groups, with adjustment for potential confounding effects. Results: A total of 805 caregivers of AD/dementia patients, 1,099 other caregivers, and 27,137 noncaregivers were identified. Both AD/dementia caregivers and other caregivers had lower HRQoL and EQ-5D scores, higher total activity impairment, and more caregivers tended to experience anxiety than non-caregivers. There were no significant differences in the involvment in basic and instrumental activities of daily living (ADL) between AD/dementia caregivers and caregivers of other conditions. Notably, AD/dementia caregivers were more involved in making treatment decisions and finance management than other caregivers. Among AD/dementia caregivers caring for one patient, 395 patients lived in the community and 282 in an institution. AD/dementia caregivers whose patients lived in the community were more significantly involved in basic and instrumental ADL. Caregivers of patients with both AD/ dementia and cancer had higher caregiving burden than caregivers of patients with either condition. Conclusions: Caregivers of AD/dementia patients in Japan reportedly experienced significant humanistic burden which is associated with patients' living arrangements and the presence of an additional chronic condition. Therefore, provision of effective care/support is essential to relieve the burden experienced by the caregivers.

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