Jazette Johnson, Rebecca W. Black, and Gillian R. Hayes. 2020. Roles in the Discussion: An Analysis of Social Support in an Online Forum for People with Dementia. Proc. ACM Hum.-Comput. Interact. 4, CSCW2, Article 127 (October 2020), 30 pages. https://doi.org/10.1145/3415198
In this work, Jazette conducted an analysis of posts on an online forum designated for people living with dementia to share their experiences and ask questions related to dementia. During the study, she found that although the forum was designated specifically for people living with dementia many other individuals such as caregivers, family, friends and people tracking warning signs of dementia (but undiagnosed) were all going to this one place to ask questions. This was a bit concerning because there are many online communities around for dementia caregivers, but more importantly, the study showed that caregivers, family, and friends sought more support from the forum than they were providing to the people living with dementia. Knowing that everyone can benefit from engaging in dementia conversations and learning about the disease, Jazette designed a model for moderation that aimed to help decrease the emotional burden people living with dementia may experience from having to continuously explaining their experiences.
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