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Observational Study
. 2025 Sep;44(9):1414-1423.
doi: 10.1177/07334648241310707. Epub 2025 Jan 9.

"I Aim to Fulfill My Promise": Dementia Caregiving from the Perspective of Spouses and Partners

Haley M Shiff  1   2 , Theresa A Allison  2   3   4 , Madina Halim  2 , Kenneth E Covinsky  2   3 , Alexander K Smith  2   3 , Deborah E Barnes  5 , Jennie M Gubner  2   6   7 , Kara Zamora  2   3
Affiliations
Observational Study

"I Aim to Fulfill My Promise": Dementia Caregiving from the Perspective of Spouses and Partners

Haley M Shiff et al. J Appl Gerontol. 2025 Sep.

Abstract

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/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.

Keywords: caregiving dyads; ethnographic analysis; spousal caregivers.

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Conflict of interest statement

Declaration of conflicting interestsThe author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: Dr. Barnes is Chief Science Advisor, co-founder, and shareholder of Together Senior Health. She also is a co-inventor of the Preventing Loss of Independence through Exercise (PLIÉ) and Paired PLIÉ programs and has the potential to earn royalties. The other authors have no conflict of interest to declare.

Figures

Figure 1.
Figure 1.
Flow diagram of unified data set construction and analysis.
See this image and copyright information in PMC

References

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