Surfacing the Voices of People with Dementia: Strategies for Effective Inclusion of Proxy Stakeholders in Qualitative Research

Abstract

Best practices for conducting HCI research on dementia care increasingly involve multiple stakeholders and incorporate diverse viewpoints. When done effectively, involving proxy stakeholders such as family members and professionals can help bring forward the voices of people with dementia. However, concrete practical guidance for navigating the challenges of integrating different perspectives is lacking. We critically reflect on our own recent qualitative fieldwork involving participants with dementia, family caregivers, and facilitators at a local social program for people with dementia, re-examining our interview transcripts and observation notes through content analysis. We illustrate practical approaches to prioritizing participants' voices through concrete excerpts that demonstrate strategies for better managing dynamics, intervening effectively, and engaging all stakeholders in the research process. Our reflections and proposed guidelines can benefit HCI researchers and practitioners working with vulnerable populations. We hope this work will spur further discussion and critique to strengthen and improve research practices in this domain.CCS Concepts: • Human-centered computing → Empirical studies in HCI.

Introducing and Familiarising Older Adults Living with Dementia and Their Caregivers to Virtual Reality

“…Group members consented to participate in the study over a 14–16-month period. Given the individual and dynamic manifestations of dementia and its impact on one’s ability to express preferences in some instances, the inclusion of their caregiver was considered appropriate [ 32 ]. Having the caregiver involved in the study provided a sense of reassurance for people living with dementia and ensured that a holistic view of the lived experience of dementia could be achieved [ 55 ].…”

“…When designing technology to support the health needs of this population, accessibility and suitability to the individuals needs must be prioritized [ 6 , 27 , 28 , 29 , 30 , 31 ]. The drive toward participatory approaches warrants the inclusion of people living with dementia and their informal caregivers as ‘experts-by-experience’ to plan for data collection and identify design priorities for VR applications [ 32 , 33 , 34 , 35 ]. Despite the benefits of involving people living with dementia and other stakeholders in the technology design process, Muñoz et al [ 10 ] acknowledge low adoption rates for these studies and a lack of consensus on the most appropriate methods to support their involvement.…”

Designing for Everyday Sounds at Home with People with Dementia and their Partners

“…Bespoke design probes can cue personal narratives and values in people with dementia and lead to a better understanding of the everyday experiences of dementia by the designer or researcher [35,92]. Concrete examples of technologies or designs can convey abstract concepts to people with aphasia [27]. For example, mockups can defne expectations for people with dementia early in the design phase and elicit meaningful forms of interaction [72,73].…”

“…Informal visits involving small talk and casual conversation can help researchers and designers to understand the participants' general life circumstances and create mutual familiarity before the research or design activities [10]. This personalized approach often requires the involvement of family members who have shared life experiences with the person with dementia and can contribute rich understandings about the participants' narratives and behaviors [15,27]. The presence of family also provides feelings of safety, but they might interfere and impede the person with dementia in voicing their opinions [76].…”

“…The presence of family also provides feelings of safety, but they might interfere and impede the person with dementia in voicing their opinions [76]. Therefore, adopting a refective approach allows the researcher to address the asymmetric relations between the caregiver and receiver of care [26] by mediating attention to ensure family members amplify instead of suppress the person with dementia [27].…”