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“Taking care of myself as long as I can”: How People with Dementia Configure Self-Management Systems

Self-management research in HCI has addressed a variety of conditions. Yet, this literature has largely focused on neurotypical populations and chronic conditions that can be managed, leaving open questions of what self-management might look like for populations with progressive cognitive impairment. Grounded in interviews with seventeen technology savvy people with mild to moderate dementia, our analysis reveals their use of technological and social resources as part of the work of self-management. We detail how participants design self-management systems to enable desired futures, function well in their social world, and maintain control. Our discussion broadens the notion of self-management to include future-oriented, sociotechnical, self-determinate design. We advocate for expanding the way technologists, designers, and HCI scholars view people with mild to moderate dementia to recognize them as inventive creators and capable actors in self-management.