Abstract
Background: Behavioral, psychological, and physical symptoms are prevalent in advanced dementia, as well as major contributors to poor quality of life, health care costs, caregiver burden, and nursing home placement. Objectives: To determine the frequency and severity of symptoms in persons with advanced dementia living in the community, as well as the association between symptoms and satisfaction with care, and the identification of factors associated with symptom burden. Design: Baseline data from a clinical trial testing the effectiveness of collaborative care home-based management for patients with advanced dementia. Setting/Subjects: Two hundred and one patient-caregiver dyads from an urban area in the United States, who were still residing in the community. Measurements: Caregivers completed the Symptom Management in End-of-Life Dementia (SM-EOLD) and Satisfaction with Care in End-of-Life Dementia (SWC-EOLD) scales. Results: Patients' mean age was 83.1; 67.7% were women, and most were either White (50.2%) or African American (43.8%). Most (88.1%) had severe dementia (Functional Assessment Staging Tool [FAST] stage 6 or 7). SM-EOLD mean score was 29.3 (on 0-45 scale) and SWC-EOLD score was 32.6 (on 10-40 scale). Pain, agitation, anxiety, and resistiveness to care were present at least weekly in ≥40% of patients. Multivariable linear regression modeling showed that higher neuropsychiatric symptom severity (assessed by the Neuropsychiatric Inventory), increased caregiver strain, and higher medical comorbidity were all independently associated with increased symptom burden. Satisfaction with care was high and had only a modest correlation (r = 0.20) with symptom burden. Conclusions: Community-dwelling patients with advanced dementia and their caregivers may benefit from home-based palliative care interventions to identify and manage burdensome symptoms.