With the rapid growth of the aging population, the prevalence of dementia is expected to increase significantly, leading to a growing reliance on family caregivers to provide essential support. While prior research has extensively examined the experiences of family caregivers, the perspectives of Persons Living with Dementia (PLWDs) and their roles in caregiving relationships remain underexplored in social gerontology, health informatics, and Human-Computer Interaction (HCI) literature. This study addresses this gap by conducting a qualitative analysis on posts created by PLWDs on an online dementia forum. We analyzed PLWD’s posts regarding their self-expressed needs, perceptions of their roles in caregiving relationships, and proposed design solutions to support their interactions with caregivers. We reveal that PLWDs wish to actively engage in shaping their relationships with caregivers and take proactive steps to support them. This study contributes to the existing social gerontology, health informatics, and HCI literature by amplifying the voices of PLWD, shedding light on their agency, and informing the design of technologies that foster stronger PLWD-caregiver relationships. Building on these insights, we outline a set of design directions to guide future HCI work to develop more equitable, empathetic, and sustainable care partnerships between PLWDs and their caregivers.
Yuan et al. (Mon,) studied this question.