The meanings african American caregivers ascribe to dementia-related changes: The paradox of hanging on to loss

Allison Lindauer, Theresa A. Harvath, Patricia H. Berry, Peggy Wros

Research output: Contribution to journalArticlepeer-review

28 Scopus citations


Purpose of the Study: Using an interpretive phenomenological approach, this study explored the meaning African American (AA) caregivers ascribed to the dementia-related changes in their care-recipients. Design and Methods: Data were gathered in this qualitative study with 22 in-depth interviews. Eleven AA caregivers for persons with dementia, living in the Pacific Northwestern United States, were interviewed twice. Four caregivers participated in an optional observation session. Results: Analysis based on the hermeneutic circle revealed that, for these caregivers, the dementia-related changes meant that they had to hang on to the care-recipients for as long as possible. Caregivers recognized that the valued care-recipients were changed, but still here and worthy of respect and compassion. Ancestral family values, shaped by historical oppression, appeared to influence these meanings. Implications: The results from this study suggest that AA caregivers tend to focus on the aspects of the care-recipients' personalities that remain, rather than grieve the dementia-related losses. These findings have the potential to deepen gerontologists' understanding of the AA caregiver experience. This, in turn, can facilitate effective caregiver decision making and coping.

Original languageEnglish (US)
Pages (from-to)733-742
Number of pages10
Issue number4
StatePublished - Aug 2016
Externally publishedYes

Bibliographical note

Publisher Copyright:
© The Author 2015. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved.


  • African American older adults
  • Caregiving-informal
  • Dementia
  • Humanities
  • Qualitative research methods


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