"it's a lonely disease": Cultivating Online Spaces for Social Support among People Living with Dementia and Dementia Caregivers

Abstract

People living with dementia as well as dementia caregivers are finding new ways to provide and receive support online. The emerging use of social media platforms-such as TikTok, Clubhouse, and Facebook-by people with dementia and dementia caregivers enables new forms of sharing about stigmatized, poorly understood, and often under-discussed experiences. Building on prior work focused on formal support groups, we report findings from an interview study of how people living with dementia and dementia caregivers provide and receive social support through emerging online spaces and communities. Our analysis reveals that both groups cultivate new online spaces for sharing about the experience of dementia while also navigating tensions surrounding public disclosure of lived experiences, advocacy, education, and the ability to protect and keep private elements of life experiences. We discuss how these groups cultivate online spaces across platforms and contribute to ongoing ethical debates about consent in online communities. We conclude with questions that guide future work on emerging online spaces for supporting people living with dementia and caregivers of people living with dementia.