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

Abstract

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.

Dementia-Friendly Transportation Services: A Scoping Review

“…A few studies asked the community members if there was a need for a service, whereas others asked if there was an unmet need. In China, the needs of transportation services were reported by 67.1% of all family caregivers of people living with dementia at home, including 58.2% of working caregivers and 72.8% of nonworking caregivers in 2018 ( Sun et al, 2022 ). In Hong Kong, 30.0% of community-dwelling older adults living with dementia had unmet needs in terms of transportation ( Chung, 2006 ).…”

“…Most of those results were quantitative and cross-sectional. Caregivers and/or people living with dementia reported using transportation services in different proportions across regions, countries, gender, and time: 22.4% use (United States, Biegel et al, 1993 ), 21.0% monthly use, 6.8%–37.4% across regions (United States, 1995, Harrow et al, 2004 ), 21.6% use for female caregivers compared to 12.7% of male caregivers (United States, Sun et al, 2008 ), 42.7% last 4 weeks use by wives of community-dwelling care recipients with dementia (Canada, Pedlar & Biegel, 1999 ), 51.8% use (China, 2018, Sun et al, 2022 ), 68.8% use in Sweden at inclusion, with the frequentation decreasing to 50.0% in Year 1 follow-up and 37.5% in Year 2 ( Gaber et al, 2021 ). Reasons for using services or not using services were not explored.…”

“…Next, one study explored both needs and use of services. Although 67.1% needed services, only 52% reported using services ( Sun et al, 2022 ). The reasons to explain this gap were not explored.…”