Rupsha Mutsuddi, Shital Desai, and Hailey Slattery-Johnson
Dementia is a progressive neurodegenerative condition which affects people living with dementia (PLWD) worldwide. Loneliness affects PLWD uniquely by affecting cognitive health and physical health negatively. Systemic design is an approach to designing artefacts such as technologies or services which embraces sociotechnological complexity and employs strategies for sustainable use within the system. Co-Design is a methodological approach which involves collaboration between non-designers, researchers, and designers/developers. Using Co-Design and Systemic Design approaches leads to the creation of products, services, and technologies that are sustainable and socially relevant for underrepresented populations. This paper investigated PLWD’s experiences with loneliness and factors that contributed to loneliness in PLWD. We mapped these experiences into a systems map to identify causal loops that can inform the future design of technologies. The Co-Design Activity was facilitated through the TIDE (Technologies, Isolation, Daily Life, and Everyday Activities) Tool. We conducted two Co-Design Workshops at York University and at Shorthills Villa Retirement Community with 14 PLWD, 13 Caregivers, and 3 Technology Developers. We analysed the workshop transcripts and data from the TIDE tools through directed and conventional content analysis in Atlas.Ti. Thematic codes from the content analysis helped us target key quotations, which helped us identify system variables. These system variables were consolidated into nodes, organised into clusters, and mapped into a visual systems map in Kumu.io based on relationships. We identified two reinforcing loops, which are (1) Rapid Development of Technologies, Loneliness, Digital Discomfort and Exclusion (R1) and (2) Sense of Self and Dignity and Loneliness (R2). We also identified one mixed loop, which contained a complex interplay of balancing and/or reinforcing loops, we identified as containing Rituals in Everyday Life, Recreation Games and Cultural Activities, Spiritual Beliefs and Activities, Usability of Technologies, Aging and Life Course, Physical Activity Outdoors and Climate Change (M1). We end the paper by offering three design implications addressing each causal loop: (1) Considering a Slow Technologies Approach to Technology Design that will prioritise reflecting and rest, (2) Design holistic technological support for aspects of loneliness beyond social interaction, which will prioritise playfulness, joy, exploration and leisure to improve sense of self, and (3) Focus on traditions, rites, and practices in ritual based technology design while considering contextual stressors like climate change and the effect of aging on technology.
Keywords: Co-Design, Dementia, Health and Wellbeing, Loneliness, Systemic Design