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

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.