Department of Psychology, 276175Bournemouth University, UK.
College of Medicine and Health, 171002University of Exeter, UK.
Dementia (London). 2021 Oct;20(7):2542-2557. doi: 10.1177/14713012211002410. Epub 2021 Mar 25.
A diagnosis of dementia in midlife can be challenging, causing losses or changes in a person's identity. Narrative provides a means of reconstructing identity and can be communicated on social media. There has been initial evidence on the value of Twitter for people with dementia, but researchers have not yet directly engaged with users' perspectives. We employed a narrative model of identity to examine why people with dementia use Twitter and what challenges they face. Interviews were conducted with 11 younger people with dementia and analysed thematically. Participants used Twitter to counter a loss of identity through community membership and by regaining a sense of purpose. They sought to redefine dementia identities by challenging stigma and campaigning for social change. The character limit of tweets facilitated narrative through which participants preserved their identities. These findings suggest that Twitter could be an important source of post-diagnostic support for people with young-onset dementia. However, there are some risks as Twitter was sometimes a hostile environment for individuals who did not present in a 'typical' manner, or faced technical difficulties because of their symptoms. In the future, platform developers could work with people with dementia to make Twitter more accessible for this group.
中年期痴呆症的诊断具有挑战性，可能导致个人身份的丧失或改变。叙事提供了重建身份的一种手段，并可以在社交媒体上进行交流。已经有初步证据表明 Twitter 对痴呆症患者有价值，但研究人员尚未直接关注用户的观点。我们采用了一种身份叙事模型来研究为什么痴呆症患者使用 Twitter 以及他们面临哪些挑战。我们对 11 名年轻的痴呆症患者进行了访谈，并进行了主题分析。参与者通过社区成员身份和重新获得目标感来使用 Twitter 来对抗身份的丧失。他们试图通过挑战污名和争取社会变革来重新定义痴呆症身份。推文的字符限制通过叙事促进了参与者保持自己的身份。这些发现表明，Twitter 可能成为年轻发病型痴呆症患者的重要诊断后支持来源。然而，Twitter 有时对那些不以“典型”方式出现的人或由于症状而面临技术困难的人来说是一个敌对的环境，因此存在一些风险。在未来，平台开发者可以与痴呆症患者合作，使 Twitter 更便于这一群体使用。
