Health of the Pandemic Dementia Paid Staff and Unpaid Caregiver Workforce in Congregate Care and Community Settings

Objectives: The objective of this study was to assess the impact of the pandemic on the health, well-being, and access to services of paid staff and unpaid caregivers of persons living with dementia.

Design: Questionnaires were developed to capture the experiences of paid staff and unpaid caregivers throughout the pandemic, leveraging a pre-existing clinical trial collaborative.

Setting: Community and long-term care locations in Miami, Florida, Boston, Massachusetts, and the greater Baltimore, Maryland, and D.C. areas.

Participants: Paid staff from Miami Jewish and Benchmark who worked with patients with dementia during the first two years of the pandemic. Unpaid caregivers who lived within the catchment area of the study sites and provided care for community-based persons with dementia.

Measurements: Measures included the Coronavirus Impact Scale, the Herth Hope Index, NPI-Q, the Modified Caregiver Strain Index, PHQ-8, items about workplace changes, caregiving relationship, and changes to caregiver support.

Results: Paid staff were statistically more likely to have been exposed to, tested for, hospitalized, or seriously ill with COVID-19 and indicated moderate to severe impacts to medical and mental health services compared to unpaid caregivers. Unpaid caregivers exhibited significantly higher rates of depressive symptom severity and overall lower scores on the Herth Hope Scale compared to paid staff.

Conclusions: Our findings suggest that the pandemic had significant impacts on the mental health and general well-being of unpaid caregivers. While notable that paid staff suffered from increased exposure and decreased access to services, policies supporting both workforces should respond to the unique outcomes that each faced, post-pandemic.