Shiff Haley M, Allison Theresa A, Halim Madina, Covinsky Kenneth E, Smith Alexander K, Barnes Deborah E, Gubner Jennie M, Zamora Kara
Department of Medicine, New York Medical College, Valhalla, NY, USA.
San Francisco Division of Geriatrics, Department of Medicine, University of California, San Francisco, CA, USA.
J Appl Gerontol. 2025 Jan 9:7334648241310707. doi: 10.1177/07334648241310707.
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) Spousespartners 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.
在美国，配偶为痴呆症患者提供17%的居家护理。痴呆症护理对配偶/伴侣的负面影响有充分记录，但我们缺乏关于配偶/伴侣整体经历的信息。我们对两项关于日常音乐参与和居家痴呆症护理的观察性研究的数据进行了二次主题分析。在本文中，我们从配偶/伴侣的角度报告痴呆症护理的经历。参与者包括15名痴呆症患者（20%为女性，20%为有色人种）；15名配偶/伴侣（73%为女性，27%为有色人种）。个体经历各不相同，但出现了一些潜在模式：1） 护理方式基于忠诚和承诺；2） 配偶/伴侣难以接受随着痴呆症进展而发生的变化；3） 随着语言能力的下降，配偶/伴侣从小的举动中找到了意义。配偶/伴侣的痴呆症护理带来了独特的挑战和回报。识别潜在的动机和力量来源可以支持护理经历。
