Surfacing the voices of people with dementia: Strategies for efective inclusion of proxy stakeholders in qalitative research

Abstract

Best practices for conducting HCI research on dementia care in-creasingly involve multiple stakeholders and incorporate diverse viewpoints. When done efectively, 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 diferent per-spectives is lacking. We critically refect on our own recent qualita-tive feldwork involving participants with dementia, family care-givers, 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 efectively, and engaging all stakeholders in the research process. Our refections and proposed guidelines can beneft 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.