End-of-Life Symptoms in Persons Dying with Advanced Dementia in the Community Setting: Findings from IN-PEACE.

Background: The symptom burden in persons dying with advanced dementia outside long-term care facilities has not been well studied.

Objective: To determine the symptom burden in persons dying with advanced dementia in the community setting.

Methods: The sample consisted of patient-caregiver dyads enrolled in the 24-month IN-PEACE trial of home-based care management for advanced dementia. Postmortem interviews were administered to caregivers of persons with advanced dementia who had recently died. The primary outcome was the Comfort Assessment in Dying-End of Life in Dementia (CAD-EOLD) scale. A secondary symptom measure was the Symptom Management in End of Life Dementia (SM-EOLD). Results were analyzed and compared to previous studies using the CAD-EOLD.

Results: Of the 83 persons with dementia who died during 24 months of follow-up, postmortem caregiver interviews were completed in 80 cases of which 79 completed the CAD-EOLD. Patients' mean age was 83.1; 68% were women, 57% white, and 37% African American. Most patients (62%) died at home and only 32% died in a hospital or nursing home. Hospice enrollment occurred in 75% of participants. Symptom management as reflected in CAD-EOLD scores was comparable to previous studies of persons with dementia dying in nursing homes. Compared to baseline SM-EOLD scores, end-of-life symptom scores were 4 points better. Intervention and control group outcomes were similar.

Conclusions: Some community-dwelling persons with advanced dementia can die at home with symptom management comparable to that received in nursing homes.