Patterns of Predeath Service Use by Dementia Patients with a Family Caregiver

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Abstract
OBJECTIVE: To describe site of death and patterns of predeath service use (hospital, nursing home, and in‐home services) among persons with dementia who have a family caregiver. DESIGN: Family caregivers who experienced the death of their relative while participating in a 5‐year longitudinal study were surveyed retrospectively about service use patterns in the 90 days before the death of their relative. SETTING: Community. SUBJECTS: Eighty‐two family caregivers of a person with dementia who experienced the death of their relative while participating in a longitudinal study (n = 326) were included in this analysis. All participants were providing care to a relative with dementia in the home at entry into the study. MAIN OUTCOME MEASURES: Survey items were used to identify site of death and measure use of the following services in the 90 days before death: hospital, nursing home, skilled nursing services, home health aides, and physician home visits. RESULTS: Sixty‐nine percent of the caregivers were spouses, and 28% were adult children. Family caregivers had been providing care for an average of 6 years (SD = 3.9) before the death of their relative. The most frequent setting for patient death was home (42%), followed by nursing home (32%) and hospital (26%). The average number of days spent at home in the 90 days before death by the sample was more than 60 days. Thirty‐four percent of the dementia patients were cared for exclusively in the home in the 90 days before death, and 34% spent more than half of the 90 days before death at home. Hospital stays were brief, and less than one‐fourth of the sample spent all of the 90 days before death in an institutional setting. Twenty‐one percent of the sample used no in‐home services in the 90 days before death, 48% of the sample did not use skilled nursing services, and only 27% received a physician home visit. CONCLUSIONS: The results of this study suggest that dementia patients who have a family caregiver receive a significant proportion of their care at home in the 90 days before death. A hospice approach may help address the needs for assistance of families who provide terminal care in the home for a relative with dementia.

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