PATTERNS OF PREDEATH SERVICE USE BY DEMENTIA PATIENTS WITH A FAMILY CAREGIVER

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.