Abstract

This study examines the experiences and needs of family caregivers (FCGs) for people living with dementia (PLWD) during the coronavirus disease 2019 (COVID-19) pandemic. Six focus groups were conducted with 21 FCGs from across the care continuum and thematic analysis was used to illuminate FCGs descriptions of their experiences and needs. Three main themes were identified that highlight the disruption the pandemic caused for FCGs: changes in the caregiving role, information use and needs, and mental and physical health outcomes. To better support FCGs during COVID-19 and future public health emergencies, we recommend that (a) information is accessible, specific, and centralized; (b) resources are tailored to the caregiving dyad (FCG and PLWD) and creatively adapted to public health restrictions; and (c) opportunities for the caregiving dyad to receive physical, social, and emotional engagement and support are maintained.

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