P60: Development of a participant-driven dementia learning program by people living with dementia

Abstract

Objective:

All older adults, including those already living with dementia, should be provided with adequate knowledge about dementia and be aware of how to navigate the social resources available to them. The purpose of this study was to develop a practical program to help older adults living in the community learn about cognitive decline and how to use related social resources.

Methods:

Program participants included attendees of a community center for dementia support in a major Japanese city, as well as the residents of a large housing complex in the local area. Within the cohort, there were participants who willingly disclosed to having dementia. The program began in February 2021 and was held once a month for a total of 15 hour-long sessions. A participant survey was administered at each session to gather the demographic information of participants and their understanding of the program. Additionally, the staff conducted recorded verbal discussions about the program, which were then reviewed using thematic analysis.

Results:

The program structure was as follows: (1) participants decided the theme; (2) the first half of each session comprised lectures, while the second half included discussion and group work; and (3) rules for discussion were established (do not interrupt, do not unilaterally deny what people say, maintain confidentiality). The average number of participants per session was 12.1. Survey results indicated that 70.5% of participants were female and, in terms of age, the largest number of attendees were 81-90 years old (48.5 ). Most participants “understood the program content well” (72.5%) and indicated that “they would strongly like to participate again” (64.2%). The recorded participant discussions about the program were suggested, after review, to be more superficial as a result of Japanese people's particular attitude of not wanting to bother others.

Conclusion:

Participants were highly satisfied with the program and were able to help develop a practical program for people living with dementia to learn effectively. A challenge was that participants had a “do not want to bother others” mindset, which could inhibit them from expressing their true wishes and make them less likely to use social resources.