Enriching Social Sharing for the Dementia Community: Insights from In-Person and Online Social Programs
Jiamin Dai, Karyn Moffatt · 2023 · ACM Transactions on Accessible Computing · doi:10.1145/3582558
Summary
This paper presents a comparative study of in-person and virtual social programs for people with dementia, examining how the COVID-19 pandemic transformed community-based social engagement. The research centers on "Tales & Travels," a storytelling program hosted by the Westmount Public Library in Montreal in collaboration with the Alzheimer Society. In its in-person format, the program invited people with early-to-middle stage dementia and their caregivers to explore different countries through books, maps, food, music, and videos over 2-hour sessions. When pandemic restrictions forced a shift online, the program adapted to 45-minute Zoom sessions with breakout rooms for small-group storytelling. The methodology combines two fieldwork phases: on-site observations and interviews from 2019 (published at CHI 2020) and virtual fieldwork from 2020-2021 including follow-up interviews with caregivers and facilitators, plus researcher participation as a volunteer facilitator across 35 virtual sessions. This longitudinal, ethnographic approach enabled rich comparison between physical and virtual formats of the same community program. The research adopts frameworks from critical dementia studies and technology narrative, positioning people with dementia as competent individuals capable of meaningful expression, rather than focusing solely on impairments. The community conceptualization extends beyond individuals with dementia to include caregivers, family members, and professionals—recognizing that social programs serve and impact all stakeholders.
Key findings
The pandemic intensified existing challenges for the dementia community: caregivers reported increased isolation, complicated caregiving situations, and the loss of structured day programs that had been their loved ones' primary social outlets. People living in care facilities experienced particularly severe impacts, with one residence losing 50% of residents to COVID-19. Virtual programs successfully maintained community connections but with significant tradeoffs. Participants missed the physical ambiance of the library, the spontaneous interactions around shared tables, and multisensory elements like themed snacks. However, the virtual format offered unexpected benefits: easier sharing of personal artifacts from home (photo albums, souvenirs), larger reach for geographically distant participants, and the ability to quickly search for supplementary materials during conversations. The study identified key facilitation strategies for virtual dementia programs: leveraging breakout rooms for intimate 3-4 person conversations; using music and videos as engagement anchors since audio "transferred well to Zoom"; leaving long pauses for participants to collect thoughts; and careful pre-session planning to match participants in breakout rooms based on personalities and shared interests. Technical accommodations documented include: using first names only for privacy, muting participants who couldn't unmute themselves due to motor skill challenges, saying goodbye individually to prevent confusion about leaving, and coordinating with caregivers in advance about setup. Caregiver roles expanded significantly in virtual settings—they now operated the technology, kept their loved ones on track during sessions, and often participated actively themselves. One unexpected positive: caregivers found virtual sessions valuable for their own social needs, with some attending even when their loved one chose not to.
Relevance
This research offers practical guidance for designing inclusive virtual social programs for cognitively diverse populations. The detailed facilitation strategies—breakout room sizing, music as engagement anchor, extended pause times, individualized goodbyes—translate directly to any organization running remote programs for people with dementia or similar cognitive accessibility needs. For accessibility practitioners, the study highlights that cognitive accessibility in synchronous communication requires more than interface modifications. Social cues that facilitate in-person interaction (physical proximity, shared attention on objects, nonverbal communication) must be actively reconstructed through facilitation techniques when moving online. The finding that some participants sat far from the camera while caregivers managed controls suggests videoconferencing interfaces should better support proxy operation. The research challenges deficit-focused technology design for dementia by demonstrating that community social programs—not just clinical tools—meaningfully improve quality of life. The expanded conceptualization of "dementia community" to include caregivers as legitimate beneficiaries (not just support providers) has implications for how assistive technology benefits are evaluated. The paper proposes design directions including "intervention in a box" kits combining physical materials with virtual programs, and specialized prompting systems to help people with dementia manage meeting controls like muting and unmuting.
Tags: dementia · cognitive accessibility · social computing · videoconferencing · caregivers · community programs · COVID-19 · remote interaction · older adults