Peer support meeting of people with dementia: a qualitative descriptive analysis of the discussions

Abstract

Abstract Background Dementia cafés for people with dementia and their caregivers are promoted in national dementia policies. The effect of dementia cafés on people with dementia has been reported through narratives of caregivers who participated the dementia cafés. However, evidence derived from the data, which included only people with dementia, is sparse. The aim of this study is to analyze the narratives of people with dementia in peer support meetings in Tokyo where only people with dementia participate, i.e., caregivers were not present. Methods People with dementia and older people with subjective cognitive impairment were recruited in our community-based participatory research centre. Based on the qualitative descriptive approach, we conducted a thematic analysis of the field notes, which was made through ethnographical observation of the meetings. Results Twenty-five meetings were held from November 2018 to March 2020. The cumulative total number of participants was 196. First, the symptomatic problems related to living with dementia were mentioned, which were collectively named under the overarching category of ‘Experience of living with dementia.’ Second, questions and solutions to the various symptoms were discussed, which were named the ‘Quest of Symptoms.’ Third, we noted the narrative that reflected on daily life, feelings, and the life that one has led, which were named ‘Life story.’ Fourth, we noted narratives of how symptoms have improved and their world has expanded, which were named ‘Hope.’ Fifth and most importantly, narratives about compassion for people with dementia in the past and future, as well as for people of the same generation, were discussed, which were named ‘Compassion.’ Conclusions The lived experiences of people with dementia were revealed. Participants noted they were not just being cared for but exchanging information and exploring the symptoms; in other words, they were resilient. Furthermore, more positive aspects concerning living with dementia were discussed, such as ‘Hope’ and ‘Compassion.’ Further research concerning the discourse of people around the participants is necessary to evaluate the situation from multiple perspectives.