'Caring beyond capacity' during the coronavirus pandemic: the experiences of family caregivers of people with dementia from the IDEAL cohort

Abstract Some carers of people with dementia have reported increased caring demands and carer stress during the COVID-19 pandemic. Carers’ experiences during this time may also have implications for resilience. As part of the INCLUDE component of the IDEAL cohort study, the overall aim of this subtle realist qualitative study was to explore family carer experiences of caring for someone with dementia one year into the COVID-19 pandemic in England, and to consider the study findings in relation to resilience frameworks in dementia caregiving. Seven family carers of people living with mild-to-moderate dementia were interviewed, and themes derived using framework analysis. Themes described the complex challenges of caring during the pandemic, with interviewees burned out and ‘caring beyond capacity’ due to unmet needs within the caring role and caring in isolation from family and professional support. Findings provide evidence that trait resilience approaches fail to account for important aspects of carers’ experiences, highlighting the range of contextual factors which influence experiences of the caregiving role, lending support to transactional resilience frameworks. More importantly than building individual resilience, timely practical support for carers is essential to protect their well-being and to ward against the potential consequences of carer burnout.