The precariousness of living with, and caring for people with, dementia: Insights from the IDEAL programme

This paper uses precarity as a framework to understand the vulnerabilities experienced by those living with or
caring for someone living with dementia. Drawing on qualitative interview data from the Improving the Experience of Dementia and Enhancing Active Life (IDEAL) programme, we attend to our participants’ reflections on
how they manage the condition and the wider circumstances in which this occurs. To interrogate the utility of
precarity, we focus on our participants’ descriptions of needs and challenges and set these alongside both the
wider contexts in which they seek or offer care (formal and informal) and the sets of values attributed to different
ways of living with dementia. Building on the work of Portacolone, our analysis identified four interconnected
themes: uncertainty; experiences of support and services; independence and personhood; and cumulative pressures and concerns. We develop this analysis by reviewing how our themes reflect, extend, or depart from
previously identified markers of precarity and consider the specific ways in which these markers shape the lives
of those living with dementia.