Living in a Constant State of Flux: How Family Caregivers Navigate the Dementia Caregiving Journey CSCW028

Technologies to support dementia caregivers are often oriented around key milestones and transitions in the caregiving journey, which may not align with how family caregivers conceptualize and adapt to the everyday realities of care. In this study, we present findings from semi-structured interviews with 15 family caregivers of people with dementia to understand how they perceive their caregiving journeys over time. We find that caregivers live in a constant state of flux, characterized by ongoing, unpredictable, and multidimensional changes and fluctuating care demands throughout their journey. Our findings identify three ways caregivers respond to this constant state of flux: navigating through interdependent, multidimensional changes; iteratively adjusting and abandoning tools and supports; and developing an anticipatory mindset oriented toward future disruptions. We contribute to CSCW and HCI by showing how ongoing, unpredictable fluctuations constitute dementia caregiving and use this orientation as a way of thinking about designing technologies for dementia care.