Technologies for Health Management of Neuro-degenerative Conditions

How People with Dementia Configure Self-Management Systems

With trends showing an overall increase in chronic conditions, researchers in HCI have worked to design technologies to support individuals in managing their health through approaches such as medicalized self-tracking for health-related behavioral change. However, researchers in HCI have called attention to the ways such medicalized approaches ignore the mundane nature of health management for individuals living with neurodegenerative conditions. Further, these medicalized self-tracking technologies are not applicable to individuals living with neurodegenerative conditions with no medical treatment or lifestyle change to indefinitely stop the progression. To inform specific design considerations for health management technologies for users with neurodegenerative conditions, I conducted in-depth semi-structured interviews with 17 technologically savvy people with mild to moderate dementia. Our findings revealed the need to design future-oriented, sociotechnical, and self-determinate health management systems [Dixon, 2021].

Participant observation session
Zoom interview with Participant

Online Health Information Behaviors of People with Dementia – Contextual Inquiry

Based on what we learned in the self-management study, some everyday technologies which might provide assistance in managing their health were avoided by participants. For example, one participant described no longer using Google Search to find dementia-related health information because of the “preponderance of these bogus sites that are selling miracle cures” [Dixon, 2021]. This finding led to research questions concerning the health information behaviors of people with dementia. I took an Action Research approach, leading a mixed-ability team of researchers in conducting sixteen remote, one-hour contextual inquiry sessions with people living with mild to moderate dementia. Through a constructivist grounded theory analysis we uncovered ways participants with dementia use everyday technologies (e.g., search engines, online peer support groups, social media, online subscriptions, etc.) to facilitate their various health information behaviors. This work is published in JMIR [Dixon, 2022].

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