Johnson, Jazette, Vitica Arnold, Anne Marie Piper, and Gillian R. Hayes. “” It’s a lonely disease”: Cultivating Online Spaces for Social Support among People Living with Dementia and Dementia Caregivers.” Proceedings of the ACM on Human-Computer Interaction 6, no. CSCW2 (2022): 1-27.
Foundational user research to understand how a broad and diverse set of people living with dementia and dementia caregivers experience online social technologies beyond what we already know about online health communities and formal support groups.
Timeline: 10 weeks
My Role: Lead Researcher
- Create interview protocol
- Recruit and manage participants
- Data Analysis
- Present insights for various communities (e.g. nonprofit organizations; UX technical communities)
Methods —> Interviews
Total Participants = 20
- People Living w/ Dementia (N=4)
- Ages: 50 – 69 yrs old
- Avg Age: 62 yrs old
- Demenita Caregivers (N=16)
- Ages: 23 – 76 yrs old
- Avg Age: 55 yrs old
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.