07/08/2020

Realizing Choice: Online Safeguards for Couples Adapting to Cognitive Challenges

Nora McDonald, Alison Larsen, Allison Battisti, Galina Madjaroff, Aaron Massey, Helena Mentis

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Abstract: This paper investigates qualitatively what happens when couples facing a spectrum of options must arrive at consensual choices together. We conducted an observational study of couples experiencing memory concerns (one or both) while the partners engaged in the process of reviewing and selecting “Safety Setting” options for online activities. Couples’ choices tended to be influenced by a desire to secure shared assets through mutual surveillance and a desire to preserve autonomy by granting freedom in social and personal activities. The availability of choice suits the uneven and unpredictable process of memory loss and couples’ acknowledged uncertainty about its trajectory, leading them to anticipate changing Safety Settings as one or both of them experience further cognitive decline. Reflecting these three decision drivers, we conclude with implications for a design system that offers flexibility and adaptability in variety of settings, accommodates the uncertainty of memory loss, preserves autonomy, and supports collaborative management of shared assets.

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