A qualitative study exploring experiences of distressed family caregivers of people with dementia in the United States during the COVID-19 pandemic

ABSTRACT

This phenomenological study explored lived experiences of 19 distressed family caregivers of persons living with dementia (PLWD) in the United States during the COVID-19 pandemic. Individual interviews were conducted and analyzed using interpretative phenomenological analysis. Three themes with six subthemes emerged, including negative impacts on routines, participation, and mental health with accelerated declines in PLWD, increased challenges in care and poorer mental health in caregivers, strategies that helped (e.g. taking care of themselves), and support that could have been helpful (e.g. continuing programs through Zoom and accessing mental health services). Programs and support are needed for caregivers after the pandemic.

KEYWORDS:

• Caregivers
• COVID-19
• dementia
• psychological distress
• qualitative research

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This research was supported in full with an AOTF Intervention Research Grant (AOTFIRG21Han) funded by the American Occupational Therapy Foundation.