The use of Twitter by people with young-onset dementia: A qualitative analysis of narratives and identity formation in the age of social media

Abstract

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.