Positive Aspects of Family Caregiving for Older Adults at End-of-Life: A Qualitative Examination

J Soc Work End Life Palliat Care. 2021 Jan-Mar;17(1):64-82. doi: 10.1080/15524256.2021.1888845. Epub 2021 Mar 6.

Abstract

Family caregivers of older adults with dementia have significant challenges across many domains. While this role has been found to be burdensome on the caregiver, increasingly, though, there are also significant positive aspects reported by caregivers (known as the positive aspects of caregiving-PAC). This participatory qualitative study of 30 United States caregivers of family members age 65 and older who died with a dementia-related diagnoses used in-depth qualitative interviews and directed content analysis to understand the data. The study addressed a gap in the research literature and asked about caregiver's positive experiences during their family members' last weeks of life and investigated what this meant for the caregiver. Three primary themes were identified: (1) The Importance and Impact of Family Traditions/Celebrations, (2) Use of Humor in Living and the Difficult Experiences at End-of-Life, and (3) "The Gift of Caregiving." These findings are explored and reviewed in light of other research looking at the positive aspects of caregiving for caregivers taking care of persons living with dementia, finding concurrence and some uniqueness across the results. Implications of the findings for families and social work professionals are reviewed.

Keywords: Caregiving; dementia; end-of-life; family; older person; positive aspects of caregiving (PAC).

MeSH terms

  • Aged
  • Caregivers
  • Death
  • Dementia*
  • Family
  • Humans
  • Qualitative Research