"Just like meeting in person" - Examination of interdependencies in dementia-friendly virtual activities
Elaine Czech, Paul Marshall, Oussama Metatla · 2022 · Proceedings of the 24th International ACM SIGACCESS Conference on Computers and Accessibility (ASSETS '22) · doi:10.1145/3517428.3544815
Summary
This paper examines how dementia-friendly social programs delivered by cultural and social organizations were adapted to virtual formats during the COVID-19 pandemic, and what this reveals about the interdependencies that make such programs successful. The researchers apply and expand Bennett et al.'s interdependence framework — which examines how relationships between individuals affect the use of assistive technology — to include organizational-level interdependencies that had not previously been considered in this context. The study involved semi-structured interviews with 15 program coordinators from organizations in the US and UK (including museums, zoos, botanical gardens, dramatic arts organizations, and dementia social services), plus focus groups with 6 people living with dementia (PLWD) and 3 informal carers. Using a grounded theory approach combined with critical realist analysis, the researchers identified two main networks of interdependency: organizational interdependencies (finances, networking, partnerships) that occur before program delivery, and social interdependencies (safe atmosphere, supporting social needs, co-leading, lasting connections) that occur during and after delivery. Crucially, the method of program delivery — whether in-person, virtual, or blended — is the point where these two networks converge and cross-influence each other. The research reveals that social organizations providing dementia-friendly programs operate within complex webs of financial constraints, inter-organizational partnerships, staffing decisions, and community networks that directly shape what programs exist and how they are delivered. When COVID forced programs online, some organizations found unexpected benefits (reaching geographically distant participants, reducing venue costs), while others struggled with the digital divide, reduced sensory engagement, loss of informal social spaces for carers, and decreased participant engagement in virtual formats.
Key findings
The study identified four key strategies that build social interdependence in dementia programs: creating a socially safe atmosphere (using humour, focusing on present experiences rather than memory recall, avoiding terms like "reminiscence"), supporting unique social needs of both PLWD and carers, co-leading programs where participants take on teaching roles, and developing lasting connections through shared objects and experiences across sessions. Virtual delivery disrupted several of these strategies. Participants who were previously active in-person became passive online — one carer noted her husband "just sits back" on Zoom. The loss of informal gathering spaces was particularly damaging for carers, who had formed their own support networks during in-person programs. When a Social Club member passed away during the pandemic, the organization's gatekeeping of personal information prevented other members from sending condolences, causing feelings of alienation. However, virtual programs also created new possibilities. Coordinators could personalise and localise content for participants' home environments. Participants could share personal objects from their homes, creating new forms of sensory engagement. One coordinator described how plants given to participants during in-person programs became conversation anchors in virtual sessions months later. The researchers propose that "blended" programming — complementary virtual and in-person components rather than one replacing the other — is most promising for PLWD, with each format highlighting its inherent strengths rather than trying to replicate the other.
Relevance
This paper offers crucial insights for anyone designing technology-mediated social programs for people with cognitive disabilities. The expanded interdependence framework provides a practical analytical tool for understanding why simply moving programs online often fails — it is not just the technology that matters, but the complex web of organizational relationships, funding structures, staff expertise, and social dynamics that enable programs to exist and function. The design checklists provided (Tables 3 and 4) give concrete guidance for coordinators and technologists developing blended programs. For accessibility practitioners, the research highlights that video conferencing platforms like Zoom were not designed with dementia-specific needs in mind, and that purpose-built or adapted tools could better support the convergence of organizational and social interdependencies. The emphasis on sensory experience, shared objects across locations, and asynchronous technologies to link different program spaces points toward design opportunities for more inclusive virtual social experiences. The finding that carers' needs are often overlooked in program design — yet carers' wellbeing directly affects PLWD's social participation — reinforces the importance of designing for the entire care ecosystem, not just the individual with dementia.
Tags: dementia · social inclusion · virtual programs · interdependence · COVID-19 · video conferencing · aging · social prescribing · caregiving