背景:国家痴呆症政策中提倡为痴呆症患者及其照顾者开设痴呆症咖啡馆。痴呆症咖啡馆对痴呆症患者的影响已通过参与痴呆症咖啡馆的护理人员的叙述进行了报道。然而,从数据中得到的证据,其中只包括痴呆症患者,是稀疏的。这项研究的目的是分析在东京的同伴支持会议上痴呆症患者的叙述,只有痴呆症患者参加,即,护理人员不在场。
方法:我们以社区为基础的参与式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,我们对现场笔记进行了主题分析,这是通过对会议的人种学观察得出的。
结果:2018年11月至2020年3月举行了25次会议。累计参加人数为196人。首先,提到了与痴呆症有关的症状问题,它们被统称为“患有痴呆症的经验”的总体类别。\'第二,讨论了各种症状的问题和解决方案,被命名为“症状追求”。\'第三,我们注意到反映在日常生活中的叙述,感情,以及一个人的生活,被命名为“生活故事”。\'第四,我们注意到症状如何改善,他们的世界如何扩大的叙述,被命名为“希望”。第五,也是最重要的,关于过去和未来对痴呆症患者的同情心的叙述,对于同一代人来说,进行了讨论,被命名为“同情”。
结论:揭示了痴呆症患者的生活经历。参与者指出,他们不仅受到照顾,而且交换信息并探索症状;换句话说,他们很有弹性。此外,讨论了与痴呆症有关的更多积极方面,如“希望”和“同情”。\'需要进一步研究参与者周围的人的话语,以从多个角度评估情况。
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.