Caregiving for Persons Living With Dementia in the New Normal: Family Caregiver’s Perspective.

Persons living with dementia (PLWD) are at increased risk for COVID-19 and associated poor outcomes, including: incident delirium, hospitalization, severe symptoms, intensive care admission, and even death. PLWD are likely to rely on family caregivers to maintain their health and well-being in the community. Under normal circumstances, caregiving can be stressful and complex, and the COVID-19 pandemic has the potential to change and exacerbate the stresses of family caregiving. As a part of a larger study using descriptive qualitative methodology to explore the family caregiver understanding and experiences related to delirium in caring for a person with dementia, 14 participants (age x̄ =67, SD= 13.8) were asked about the impact of COVID-19 on their caregiving for PLWD. Thematic analysis of the transcribed interviews using Dedoose generated four overarching themes associated with the family caregiver’s perspective of changes in caregiving during the COVID-19 pandemic: 1) Cautious of COVID-19 exposure, 2) We can’t go in, 3) Feeling of isolation for both the PLWD and caregiver, and 4) Six-feet distance. The current study highlights the importance of understanding the needs of PLWD during a pandemic based upon the perspective of their family caregivers and will inform the development of ways to safely incorporate family caregivers in the interdisciplinary care team. Caregivers are integral to the care of PLWD across settings of care and should be partners even during a pandemic. Solutions for care include integrating technology for individualized approaches. Finally, future areas for research will be discussed.