Kohl, Gianna Julia; (2024) Use of technology by persons with dementia in sharing their diagnosis. Doctoral thesis (Ph.D), UCL (University College London).

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Abstract

Background: People with dementia may want to conceal their condition for fear of consequences and stigma. However, to maximise social health, it is beneficial to tell other people about one’s diagnosis. Disclosures may be made in person or, given the increasing number of people with dementia incorporating information and communication technology into their daily lives, through digital media. Aims: This thesis explored how the face-to-face intervention ‘Who to tell, how and when intervention’, aimed at people with dementia who are fearful of sharing their diagnosis with others, can be adapted for digital delivery. Methods: A systematic review and semi-structured interviews were conducted to explore disclosure and concealment of the diagnosis in person and online. Participants’ use of social media and sharing of information about their dementia was explored using a cross-sectional online survey. The ‘Who to tell, how and when’ intervention was adapted for digital delivery through user-centred design, using focus groups. A prototype was tested using think-aloud interviews. People with dementia were involved throughout this research as participants, consultants, and collaborators. Results: The systematic review revealed only one study that explored digital diagnosis disclosure and showed that disclosure decisions are complex and evolving, which was endorsed by participants interviewed for this thesis. 143 respondents aged 44 to 95 took part in the survey, with 77 respondents being social media users. People with dementia actively disclosed their diagnosis on social media for ‘advocacy and awareness’, ‘peer support’, and to proclaim their ‘dementia journey’. The findings were taken to adapt the intervention for digital delivery, with participants endorsing the final prototype based on feedback. Conclusion: Technology can be a useful tool to disclose one’s diagnosis and to receive support with the dementia journey, thus enhancing social health. Collaborations with intended end users is advised to adapt face-to-face interventions for digital delivery.

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