Inaccessibility, unresponsiveness, inconsistency, and invisibility of informal caregivers of older persons with cognitive impairment: community-based participatory research.

BACKGROUND: Studies on informal caregivers in Japan have been limited to family caregivers and largely conducted where family caregivers generally gather. Family caregivers who do not visit such places or non-family caregivers are generally overlooked, and data on these informal caregivers remains scant. Consequently, a framework is needed through which healthcare professionals can approach the informal caregivers of community-dwelling older persons. Therefore, this study approaches such informal caregivers and proposes a classification system for them from the starting point of older persons living in the community with cognitive impairment. METHODS: In 2016, we conducted an epidemiological survey of 7000 + community-dwelling older persons and identified 198 residents with Mini-mental state examination scores less than 23. A team of healthcare professionals contacted them regularly. By 2022, 92 people were still living in the community, and we systematically asked them about their informal caregivers. After approaching the caregivers and obtaining informed consent, we mailed separate questionnaires to older persons and informal caregivers. RESULTS: Among the caregivers, 59%, 34%, and 3% were the child, spouse, and sibling of the older person, while the remaining 4% were non-family caregivers. Except for two daughters-in-laws, all children were biological children of the older person. Male caregivers (46%) tended to have full-time jobs, whereas female caregivers (54%) tended to face financial difficulties. Only 3% of the caregivers had joined a family caregivers' association. Caregivers' reason for not joining such organizations was a lack of time and knowledge. A 3-tiered classification system was developed for these informal caregivers: (1) the household form, (2) accessibility, and (3) the reciprocal awareness of caregiving. Furthermore, family caregivers who lived with the older person or visited them more than once a week with reciprocal awareness of caring and being cared, or "traditional caregivers," accounted for 68% of the caregivers in this study. CONCLUSION: Core family caregivers can be easily approached at places where such caregivers generally gather. However, there also exists a group of informal caregivers who are sometimes inaccessible, unresponsive, and invisible to healthcare professionals. Moreover, their awareness of caregiving is sometimes inconsistent.

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.

[Protecting dignity: Reviewing the decision-supporting process for an isolated elderly individual living in a large housing complex].

AIM: To clarify the conditions under which dignity is maintained by reviewing the decision-supporting process for a case. METHODS: We conducted both a longitudinal epidemiological survey and action research in parallel in a large housing complex district in Tokyo, Japan, using the community-based participatory research framework. Through collaboration with community professionals, we supported an isolated elderly man who refused medical intervention for three years until his death. After his passing, we re-examined all of his records, conducted in-depth interviews with the community professionals, and held a conference to review the process of managing this individual. RESULTS: Concerning support for the decision-making, three conclusions were obtained from the data: 1) a decision is not always stated explicitly; 2) a decision should be supported by the team, because mind sometimes changes; and 3) supporting decision-making is a process in itself. For the maintenance of dignity in the medical setting, the following were kept in mind: medical context is not all that is important; supporters should wait for the right moment to intervene, and support should be provided to help the patient keep in touch with other people and the community. CONCLUSIONS: While precisely defining dignity can be difficult, we explored the conditions under which dignity could be maintained by reviewing the decision-supporting process for a single case. Geriatricians may encounter difficult and complex cases such as this in the clinical setting, but guidelines cannot cover such diverse cases.