Caring for a Relative With Dementia in Long-Term Care During COVID-19

Lauren L. Mitchell, Elizabeth A. Albers, Robyn W. Birkeland, Colleen M. Peterson, Henry Stabler, Brenna Horn, Jinhee Cha, Anna Drake, Joseph E. Gaugler

Research output: Contribution to journalArticlepeer-review

17 Scopus citations


Objectives: The COVID-19 pandemic created unique stressors for caregivers of persons with dementia living in long-term care (LTC) facilities. The purpose of this qualitative study was to identify the challenges associated with caring for a relative with dementia in LTC during the pandemic, as well as resources, strategies, and practices caregivers found helpful in coping with COVID-19. Design: This study was conducted within the context of an ongoing randomized controlled trial of a psychosocial intervention to support caregivers. Open-ended survey responses (n = 125) and semistructured interviews with a subset of the sample (n = 20) collected between June 2020 and June 2021 explored caregivers' experiences during COVID-19. Setting and Participants: Participants included 125 family caregivers of persons with dementia living in residential LTC. Methods: Thematic analysis was used to identify themes capturing caregivers' experiences. Results: In addition to concerns about COVID-19 infection, participants reported key challenges such as the difficulty of maintaining contact with relatives because of visiting restrictions, lack of information about relatives' health and well-being, worries about overburdened LTC staff, impossibility of returning relatives home from the LTC facility, and fears about relatives dying alone. Participants also identified resources, strategies, and practices that they perceived as helpful, including effective infection prevention within the LTC facility, good communication with LTC staff, and creative strategies for connecting with their relatives. Conclusions and Implications: This qualitative analysis informs recommendations for practice within LTC facilities, as well as supports that may help caregivers manage stressful situations in the context of COVID-19. Vaccination and testing protocols should be implemented to maximize family caregivers' opportunities for in-person contact with relatives in LTC, as alternative visiting modalities were often unsatisfactory or unfeasible. Informing caregivers regularly about individual residents' needs and status is crucial. Supports for bereaved caregivers should address complicated grief and feelings of loss.

Original languageEnglish (US)
Pages (from-to)428-433.e1
JournalJournal of the American Medical Directors Association
Issue number3
StatePublished - Mar 2022

Bibliographical note

Funding Information:
This research was supported by the National Institutes of Health [ R01 AG048931-05S1 to J.E.G.]

Publisher Copyright:
© 2021 AMDA – The Society for Post-Acute and Long-Term Care Medicine


  • COVID-19
  • Dementia
  • caregiving
  • long-term care


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