Engaging in Sensitive Practices: Insights and Challenges from a long-term Participatory Design Project with People with Dementia

Abstract

Over the past decade, a range of methodological approaches, user studies, and research results focused on technology for people with dementia has led to insights into the design of innovative solutions that can be embedded in the complex daily lives of people with dementia and their care-network. This paper recounts experiences and lessons learned over the course of a three-year participatory design project with and for people with dementia and their caregivers in domestic and institutional care settings. It contributes with long-term insights and reflections on the challenges confronting researchers in these sensitive care domains and discusses the need to 'know the users' and their care-networks so as to enable a deeper understanding of their unique difficulties. In particular, it examines the relationship between empathic understanding, experience-centered design, and the social appropriation of ICT, in our case exergames, in these various healthcare settings. What this might mean not only for future technology design, but also for the conduct of human-centered research is then discussed. We emphasize that designing appropriate assistive technologies for people with dementia requires sustained, empathetic engagement with both people with dementia and their caregivers, grounded in regular, trust-building interactions. Caregivers play a vital role in the appropriation and maintenance of these systems and researchers must be prepared for the emotional demands and relational commitments that such work entails. By embedding technology development within the rhythms of care and prioritizing mutual respect, researchers can create more meaningful, responsive, and sustainable support systems.