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

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.