Perceived and unmet needs for health and social services among families coping with dementia in China: A descriptive study

Objectives To describe the perceived and unmet needs for health and social services and their relative importance among families coping with dementia in urban China. Methods We used data from a cross-sectional survey conducted between 2018 and 2019 in two cities in eastern China. Trained staff conducted structured interviews of family caregivers of people living with dementia at home to obtain individual characteristics as well as types of service needs of families coping with dementia. Service needs and utilization in 24 types of services across five domains (daily living, medical/nursing, rehabilitation, mental health, and other) were examined. Descriptive statistics were used to describe characteristics of the dyads and the ranking of services based on the percentage of respondents with perceived/unmet needs. Results A total of 170 (87.6%) family caregivers completed the interviews. The mean age of the care recipient was 77.2 years (range: 60–102) and 65.3% were female. The mean age of family caregivers was 58.4 years (range: 28–90), and 57.1% were female. The top five services used by the care recipients were: primary care, medication management, housekeeping, activities of daily living assistance, and adult day service. The five services with the most unmet needs were: legal assistance (42.7%), hospice care (44.7%), respiratory secretion management (expectoration) (57.6%), life enrichment activities (65.4%), and companion care (67.0%). Except for transportation and dressing/grooming, working and nonworking caregivers reported similar relative importance of service needs. Conclusions The findings suggest that people living with dementia and their family require a wide range of services and supports to live in the community. Future research and policy efforts should target the unmet needs of families to improve dementia care in the community and promote aging-in-place.