Everyday challenges facing high-risk older people living in the community: a community-based participatory study

BACKGROUND: Considering the real-world experiences of those with cognitive impairments is important in building a positive community for older people. Community-based participatory research is an important methodology for investigators focused on improving community health. The aim of this study was to 1) investigate factors associated with the continuation of community dwelling among high-risk older people and 2) to create a model of an inclusive community space for older people in the largest housing complex district in Tokyo. METHODS: From 198 residents who completed all three steps (mail, face-to-face, and home-visit) of a previous large-scale epidemiological survey, we identified 66 residents who were at high-risk of moving out of the community. These participants underwent 6 months of regular assessments by experienced researchers to identify the factors associated with continuing to live in the community. We also employed a community action approach to develop a community space for residents in the study district where more than two researchers who were medical professionals served as staff. The services offered by the space were continuously improved according to user feedback. The function of this center was evaluated during interdisciplinary research meetings. RESULTS: After 6 months, among the 66 high-risk residents, 49 people were living in the community and 12 people had moved out of the community. Those who could not continue to live in the community had greater unmet needs in terms of social support, especially daily living support and housing support. In addition, their families perceived a heavier burden of care. Interestingly, dementia diagnosis via the DSM-5, clinical dementia rating, physical health, mental health, and long-term care usage did not predict the outcome. Through discussions with guests, we equipped the space with various services such as coordination of community care and networking with existing organizations. CONCLUSIONS: Merely providing healthcare and long-term care might not be sufficient to support community living in people with cognitive impairments. Daily living support and housing support should be provided in the context of a broad health services package. For this purpose, creating a comfortable community space for residents and community workers is essential.