Miyamae Fumiko, Sugiyama Mika, Taga Tsutomu, Okamura Tsuyoshi
Research Team for Promoting Independence and Mental Health, Tokyo Metropolitan Institute for Geriatrics and Gerontology, 35-2 Sakae-Cho, Itabashi-ku, Tokyo, 173-0015, Japan.
BMC Geriatr. 2023 Oct 9;23(1):637. doi: 10.1186/s12877-023-04329-8.
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.
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.
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.'
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.
国家痴呆症政策提倡为痴呆症患者及其护理人员设立痴呆症咖啡馆。通过参与痴呆症咖啡馆的护理人员的叙述，已报道了痴呆症咖啡馆对痴呆症患者的影响。然而，仅来自痴呆症患者数据的证据却很少。本研究的目的是分析在东京仅痴呆症患者（即护理人员不在场）参加的同伴支持会议中痴呆症患者的叙述。
在我们基于社区的参与性研究中心招募了痴呆症患者和有主观认知障碍的老年人。基于定性描述方法，我们对通过会议的人种志观察所做的现场记录进行了主题分析。
2018年11月至2020年3月共举行了25次会议。累计参与者总数为196人。首先，提到了与痴呆症生活相关的症状问题，这些问题在“痴呆症生活经历”这一总体类别下进行了统称。其次，讨论了各种症状的问题及解决方案，这些被命名为“症状探索”。第三，我们注意到了反映日常生活、感受和个人经历的叙述，这些被命名为“生活故事”。第四，我们注意到了关于症状如何改善以及他们的世界如何扩展的叙述，这些被命名为“希望”。第五，也是最重要的，讨论了关于对过去和未来的痴呆症患者以及同代人的同情的叙述，这些被命名为“同情”。
揭示了痴呆症患者的生活经历。参与者指出他们不仅仅是在接受照顾，还在交流信息和探索症状；换句话说，他们很有适应能力。此外，还讨论了与痴呆症生活相关的更积极的方面，如“希望”和“同情”。有必要进一步研究参与者周围人的话语，以便从多个角度评估情况。
