“I Aim to Fulfill My Promise”: Dementia Caregiving from the Perspective of Spouses and Partners
In the United States, spouses provide 17% of in-home care for people living with dementia. Negative impacts of dementia care on spouses/partners are well-documented, but we lack information about the holistic experience for spouses/partners. We conducted a secondary thematic analysis of data from two observational studies about everyday music engagement and dementia care at home. In this paper, we report on experiences of dementia care from the perspectives of spouses/partners. Participants included 15 people living with dementia (20% women, 20% people of color); 15 spouses/partners (73% women, 27% people of color). Individual experiences varied, but underlying patterns emerged: 1) Caregiving approaches were grounded in loyalty and commitment 2) Spouses<b>/</b>partners struggled to accept changes occurring with dementia progression, and 3) As verbal skills diminished, spouses/partners found meaning in small gestures. Spousal/partner dementia care poses unique challenges and rewards. Identifying underlying motivations and sources of strength can support the caregiving experience.
Authors
- Kara Zamora (ORCID: https://orcid.org/0000-0002-6566-3302)
- Theresa A. Allison (ORCID: https://orcid.org/0000-0003-4745-8468)
- Deborah E. Barnes (ORCID: https://orcid.org/0000-0002-2953-4079)
- Jennie Gubner (ORCID: https://orcid.org/0000-0003-4770-5844)
- Kenneth E. Covinsky
- Alexander K. Smith (ORCID: https://orcid.org/0000-0002-9276-0861)
- Madina Halim
- Haley M. Shiff
Institutions
- University of Arizona (US)
- University of California, San Francisco (US)
- New York Medical College (US)
- San Francisco VA Health Care System (US)
- Global Brain Health Institute (US)
Publication Details
- Journal
- Journal of Applied Gerontology
- Published
- 2025-01-09
- DOI
- https://doi.org/10.1177/07334648241310707
- Citations
- 2
- Primary Topic
- Dementia and Cognitive Impairment Research
- Type
- article
- Field-Weighted Citation Impact
- 2.94
Funders
- U.S. Department of Veterans Affairs
- Osher Center for Integrative Medicine
- National Institutes of Health
- University of California, San Francisco
- National Institute on Aging