Safe Enough to Share: Setting the Dementia Agenda Online

CSCW research is increasingly interested in the ways that people use technology to discuss health and disability online. In addition to studying how people share information and seek and provide emotional support, a growing area of interest is health activism. In this paper, we analyze how a project centered around sharing “real and raw” experiences with dementia provides a safe platform for people to share their authentic experiences. These accounts counter predominant depictions of dementia and push back on tokenistic involvement of people with this condition. In a study involving observations and interviews with members of this project, we find that people with dementia must negotiate several goals which at times compete with each other: sharing a “real and raw” look at dementia, changing attitudes, showcasing a polished presentation, and inhabiting a safe space. The paper concludes with a discussion of future directions for CSCW on configuring a space for dialogue on sensitive topics, health activism, and sharing online with dementia.