The multifaceted impact of COVID‐19 on dementia caregivers

Abstract

AbstractBackgroundThe COVID‐19 pandemic and consequent protective measures, including quarantines reduced or eliminated access to supports for dementia CGs. Dementia CGs have also reported increases in behavioral problems and decreases in cognition for the person with dementia (PWD) during the pandemic. We collected data on the impact of COVID‐19 on dementia CGs.MethodCGs of PWD enrolled in a telehealth intervention were interviewed via video. At baseline, CGs completed The Caregiver COVID‐19 Limitations Scale. During interviews, CGs responses to questions about COVID‐19 related concerns and spontaneous discussion of concerns were recorded in field notes.ResultMost CGs had a low level of concern that they would contract COVID‐19, but a slightly higher level of concern about the PWD. Several CGs reported at least a moderate impact of COVID‐19 related limitations on getting respite care (37.5%), leaving the house (50%), having outside visitors (25%), and gaining access to healthcare (25%). A quarter of CGs noticed at least a moderate change in the PWDs behavior. CGs also noticed cognitive decline. CGs felt changes were due to isolation, boredom, and depressive‐like symptoms. Caregivers also noted the loss of pleasurable activities they could engage in both alone and together with the PWD. A quarter of CGs also reported a great deal of difficulty explaining COVID‐19 related restrictions to the PWD. Specifically, memory loss experienced by the PWD necessitated frequent reminders about COVID‐19 and related limitationConclusionOur results are consistent with literature demonstrating reduction in CG access to respite care and other supportive services during the pandemic. CGs noted declines in cognition and increases in neuropsychiatric symptoms in the PWD perceived to be due to isolation and lack of stimulation. CGs lacked access to previously enjoyable activities outside the home. CG noted the additional burden of lack of a shared pandemic experience due to memory loss that necessitated reminders about the pandemic and associated safety measures. In conclusion, dementia caregivers grapple with lost supports that increase burden, with simultaneously increases in perceived cognitive and behavioral problems in the PWD along with new pandemic‐specific burdens. Our findings underscore the necessity for increased dementia CG programming.