Department of Psychology, Sociology and Politics, 7314Sheffield Hallam University, Sheffield, UK.
Independent Dementia Adviser, London, UK.
Dementia (London). 2022 Nov;21(8):2402-2417. doi: 10.1177/14713012221112384. Epub 2022 Jul 8.
Public narratives around dementia have historically been negative, and have not been shaped by people with dementia themselves, but stories of living with dementia are becoming more common in the public domain. This qualitative study explored the motivations and experiences of bloggers by conducting interviews with six bloggers with dementia in the UK. Thematic analysis suggested that the asynchronous nature of blogging offered a valuable, personalised space for people with dementia to tell their own stories in their own way. Blogging as a format posed some practical challenges, but bloggers developed strategies to overcome these. Motivations for blogging were on three levels: the personal (as a journal, and as a 'room of one's own'); community (as solidarity for other people with dementia, and as comfort for families and friends) and society (as an educational and campaigning tool). Whilst the study is small, and there are many voices of people with dementia missing from the blogging community, this research demonstrates the potential for blogging by people with dementia to change public narratives and perceptions of dementia.
围绕痴呆症的公众叙述在历史上一直是负面的，而且不是由痴呆症患者自己塑造的，但关于与痴呆症共存的故事在公众领域越来越常见。这项定性研究通过对英国的六名痴呆症博主进行访谈，探讨了博主的动机和经历。主题分析表明，博客的异步性质为痴呆症患者提供了一个有价值的、个性化的空间，让他们以自己的方式讲述自己的故事。作为一种格式，写博客存在一些实际挑战，但博主们制定了克服这些挑战的策略。写博客的动机有三个层次：个人（作为日记，和一个“自己的房间”）；社区（作为与其他痴呆症患者的团结，以及为家人和朋友提供安慰）和社会（作为教育和宣传工具）。虽然这项研究规模较小，而且在博客社区中也有许多痴呆症患者的声音缺失，但这项研究表明，痴呆症患者写博客有潜力改变公众对痴呆症的叙述和看法。
