Self-Disclosure and Social Media Use among Younger and Older People with Dementia: An Internet-Mediated Mixed-Methods Study

Social media can facilitate self-disclosure of a stigmatized identity. This mixed-methods study explores self-disclosure by people with dementia on social media, comparing patterns and purpose of use by those aged 65 and above versus those aged under 65. Of 143 internet-using respondents of an online survey, 77 (aged between 44 and 88 years) were users of social media. Facebook was the most commonly used platform (95%), followed by Twitter, Instagram, LinkedIn, YouTube, and TikTok. People with dementia aged under 65 used more platforms and used social media more frequently than older counterparts [chi 2 = 5.58, p = .031]. Content analysis of open-ended questions, validated and extended through qualitative interview data, showed younger users shared dementia-related information for purposes of advocacy and awareness whereas older users prioritized the dementia journey. Social media gives people with dementia a voice to share their experiences, raise awareness, and support themselves and other individuals affected by the condition.