Comfort and Satisfaction With Care of Home-Dwelling Dementia Patients at the End of Life

Abstract

Context: Despite the preference to pass away at home, many dementia patients die in institutions, resulting in a paucity of studies examining end-of-life care outcomes in the home setting.

Objective: The objective of this study was to identify modifiable factors associated with the comfort of dementia patients dying at home and families' satisfaction with care.

Methods: This is a prospective cohort study conducted from October 2014 to April 2019 in Singapore. Dementia patients at Stage 7 on the Functional Assessment Staging Scale, with albumin <35 g/L, enteral feeding, or pneumonia, were recruited from a palliative homecare program. Independent variables included demographics, medical information, and care preferences. The Comfort Assessment in Dying with Dementia scale assessed dying patients' comfort, whereas the Satisfaction with Care at the End-of-Life in Dementia scale evaluated family caregivers' satisfaction two months after bereavement. Gamma regression identified factors independently associated with comfort and satisfaction.

Results: The median age of 202 deceased patients whose comfort was assessed was 88 years. Anti-cholinergic prescription (60.4% of patients) [β (95% CI) = 1.823 (0.660-2.986), P = 0.002] was positively associated with comfort, whereas opioid prescription (89.6%) [β (95% CI) = -2.179 (-4.107 to -0.251), P = 0.027] and >1 antibiotic courses used in the last two weeks of life (77.2%) [β (95% CI) = -1.968 (-3.196 to -0.740), P = 0.002] were negatively associated. Independent factors associated with families' satisfaction with care were comfort [β (95% CI) = 0.149 (0.012-0.286), P = 0.033] and honoring of medical intervention preferences (96.0%) [β (95% CI) = 3.969 (1.485-6.453), P = 0.002].

Conclusion: Achieving comfort and satisfaction with care for dementia patients dying at home involves an interplay of modifiable factors. Honoring medical intervention preferences, such as those with palliative intent associated with patients' comfort, determined families' satisfaction with care.

Keywords: Dementia; comfort; end-of-life; home-dwelling; satisfaction with care.