Older Adults with Dementia in an Online Forum: A Preliminary Analysis

Social computing provides a variety of challenges and opportunities for people who are aging. In particular, following a recent diagnosis of dementia, older adults sometimes engage in online communities. In this work, we sought to understand what these adults are doing online, whether and how current solutions meet their needs, and what collaborative systems might be able to do to support the newly diagnosed better. We analyzed 57 posts from a forum for persons with dementia. Our findings indicate that users engaged with these forums as a means for self-expression, to connect with others, and to identify necessary resources. While seeking these types of information and support, persons with dementia sometimes provide private and vulnerable information as well as direct medical data, often in identifiable ways that would violate HIPPA standards. The tensions between need for support and the information shared presents interesting new challenges and opportunities for CSCW researchers.