ABSTRACT
Background
The issue of where to provide end-of-life care is an important concern for family members caring for older adults. Although many older adults would prefer to die at home, the preferences of family members and the psychosocial factors influencing these preferences are not well understood. This study investigated the preferences of family caregivers for end-of-life care at home and examined the relationships between these preferences, death attitudes, and the disabilities of older adults.
Methods
We conducted a web-based screening survey of 6000 older persons, of which 339 respondents answered that they currently care for a family member who needs care at home due to dementia or ageing. Of these 339 respondents, data from 246 persons were analysed, excluding those who answered that they had no problems regarding the cognitive function and daily life functioning of the person requiring care.
Results
Multiple regression analysis revealed that in addition to the care recipients’ activities of daily living (ADL), behavioural and psychological symptoms of dementia (BPSD) had affected family caregivers’ preference for end-of-life care. Furthermore, among the psychosocial factors of family caregivers, attitudes towards death and memorial service awareness influenced family caregivers’ preference for end-of-life care. Cluster analysis and ANOVA showed that the preference for caregiving at the end of life was significantly lower in a cluster where BPSD were present in older adults, even though their ADL was not declining.
Conclusions
This study showed that BPSD is an important consideration for families considering home-based end-of-life care. Additionally, memorial service awareness is a death attitude that influences preferences for end-of-life care. Traditional ancestor worship behaviours also affect the actions of families when older adults reach the end of their lives.