“It’s a lonely disease”: Cultivating Online Spaces for Social Support among People Living with Dementia and Dementia Caregivers 

Published in CSCW 2022 (citation coming soon)

In this work, Jazette conducted 20 interviews (3 people living with dementia and 17 family caregivers) to learn how caregivers and people with dementia utilize emergent (e.g. TikTok, Clubhouse) and traditional/ more established (e.g. Facebook, online discussion forums) online spaces to give and receive support. We found that although traditionally support groups have been used for people to share their experiences and receive advice, many caregivers are beginning to move to emergent online platforms to share experiences because it has shown to be a more inclusive experience. Our analysis revealed that caregivers and people with dementia create new uses of emerging social media platforms as tools for support among people living with dementia and caring for people with dementia while also surfacing tensions between representation, privacy, and publicity. 

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