Caregivers in Crisis: Caregiving in the time of COVID-19

The Rosalynn Carter Institute for Caregiving (RCI) undertook a study of caregiving in the time of COVID19 with the support of the Bristol Myers Squibb Foundation. The impetus for this study was a steady stream of informal reports from the caregivers served by RCI regarding the increase in their stress. While other studies have explored the conditions faced by caregivers and the impacts of caregiving, the purpose of this study was to understand the direct experience of caregivers, particularly changes in and causes of stress, since the beginning of the COVID-19 pandemic to:

  • Amplify the lived experiences and voices of caregivers
  • Inform program activities to support caregivers for both RCI and its program partners; and
  • Build commitment to public and workplace policy to support caregivers

An online survey was distributed to caregivers through RCI’s partner network. We define caregiver as a person who at any time in the last 12 months provided unpaid care to a relative or friend to help them take care of themselves (e.g. helping with personal needs or household chores, managing finances, arranging for outside services, or visiting regularly to see how they are doing). 422 respondents who self-identify as caregivers completed the survey between June 2 and August 1, 2020, responding to questions that consider changes in their lives since the pandemic created widespread stay-at-home
orders, school closures, and social distancing. Most of those who completed the survey were primary caregivers, but a small number were secondary caregivers or others who have been caregivers in the past. The findings portray a segment of the population under pressure, fighting to keep themselves safe while protecting the most vulnerable among us.