Dementia, Identity, and the Role of Twitter

Authors: Talbot, C.

Conference: University of Exeter


The narratives of people with dementia have traditionally been underrepresented in research, policy, and public life. The social networking site Twitter has the potential to affect the lived experiences of people with dementia and facilitate their social inclusion, but research is limited. The overarching aim of this thesis was to explore how and why people with dementia use Twitter. Study One was a content analysis of the profile descriptions of account holders who identified themselves as having dementia. The aims were to identify how many Twitter account holders identified themselves as having dementia, and to examine their characteristics. Study Two was a thematic analysis of the tweets of people with dementia. The aims were to explore how they used Twitter and to examine the illness narratives they created and promoted online. Study Three comprised thematic and longitudinal analyses of case studies of people with dementia. The aims were to examine, in their own words, how and why people with dementia used Twitter, and to explore how this changed over time. The findings of this thesis showed that people with dementia used Twitter to present themselves and their diagnosis in a positive manner. People with dementia used Twitter to have a voice on the issues that affect them, create social change, educate others, establish new social connections, expand existing offline social networks, access peer support, document experiences, communicate, and enhance feelings of self-worth. While the use of Twitter by people with dementia was largely positive, they also experienced technical difficulties, were vulnerable to online abuse, and found the platform increasingly difficult to use as the symptoms of dementia progressed. At present, Twitter might only be appropriate for people in the earlier stages of dementia. In the future, researchers could work with platform developers to make Twitter more dementia-friendly, develop guidelines for people with dementia on how to use and be safe on Twitter, and use longer timeframes to further examine how the use of Twitter by people with dementia changes as symptoms progress.

Source: Manual