Empowering older people with early dementia and family caregivers: a participatory action research study.

BACKGROUND The increase in the number of people suffering from dementia is of increasing global concern. A survey on the living conditions of the elderly in a Japanese rural community revealed a high prevalence of early dementia and the necessity for interventions not only for the elderly with early dementia but also for their families. OBJECTIVE To describe the implementation and process evaluation of a programme based on cognitive rehabilitation aimed at empowering the elderly with early dementia and education and counselling programmes aimed at likewise empowering their family caregivers. DESIGN This study used a community health action research model. Participatory action research (PAR) was conducted through a cycle of planning, action, and reflection to identify effective interventions to empower participants with dementia (PsWD) and their caregivers. SETTING A rural town in Japan. PARTICIPANTS This project involved 37 community-dwelling elderly with early or mild dementia and 31 family caregivers. METHODS A focus group interview was used for assessment. A monthly activity-based programme based on cognitive rehabilitation was developed to improve cognitive function. Three types of data were collected: observational data collected during the activities, written comments from the caregivers, the record of phone interviews and counsellings with caregivers. These data were compiled in chronological order into a portfolio for analysis. To empower family caregivers, educational and counselling programmes were offered. RESULTS The PAR lasted for 5 years and evolved over three cycles: individual, group and community. In the first cycle, the major focus of the intervention was to regain procedural skills for each PWD through a cooking programme. In the second cycle, to increase interactions with family members and with other PsWD, group activities that promoted communication among family members as well as among PsWD were implemented. The collective values and the beliefs of the PsWD's generation were validated by a series of trips to temples and shrines. In the third cycle, community participation was planned and implemented through culturally relevant sequential activities. PsWD demonstrated their expert skills and regained confidence. For family caregivers, the educational programme provided knowledge about dementia and utilization of social resources. Face-to-face and phone counsellings were offered as needed to coach problem-focused coping. These programmes helped to interpret the symptoms of dementia and to reduce the behavioural problems. CONCLUSIONS Cognitive rehabilitation theory was useful to restore lost procedural skills and regain confidence for PsWD. This PAR illustrated the importance of interventions for both community dwelling elderly with early dementia and their family caregivers.