RESUMO
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.
Assuntos
Tomada de Decisões , Habitação , Respeito , Idoso , Pesquisa Participativa Baseada na Comunidade , Humanos , Japão , Masculino , Tóquio , Recusa do Paciente ao TratamentoRESUMO
AIM: Although a dementia-friendly community is a global goal, community-dwelling persons with dementia continue to have unmet care needs. The aim of this study was to explore the characteristics of persons who experience anxiety about the possibility of not receiving proper dementia care should they need it in the future. METHODS: A questionnaire was mailed to all residents aged 65 years or older (n = 132 005) living in one Tokyo district. The questionnaire included an item that measured anxiety about the possibility of not receiving proper dementia care as well as items about sociodemographic variables, depressive symptoms, frailty, housebound status, socioeconomic status, social support, access to a general practitioner (GP), and experience of dementia care. RESULTS: Of the 74 171 participants who responded to the anxiety item, 58 481 (78.8%) reported anxiety about the possibility of not receiving proper dementia care should they need it in the future. Simultaneous multiple logistic regression analysis indicated that factors associated with this anticipatory anxiety were depressive symptoms, frailty or prefrailty, being female, not being currently socioeconomically disadvantaged, not having someone who can take you to the hospital when you do not feel well, being younger (65-74 years), being married, not trusting in neighbours, higher educational level (>9 years), not having someone to consult when you are in trouble, not working, having been socioeconomically disadvantaged in childhood, only greeting or less with neighbours, and not having the experience of dementia care. Having access to a GP, living alone, and going out less than once a week did not show a significant association. CONCLUSIONS: This large-scale study explored factors associated with anticipatory anxiety about the possibility of not receiving proper dementia care should it be needed in the future. Further studies concerning interventions to decrease such anxiety are needed.