Caregiver Outcomes of an Alzheimer's and Dementia Care Program

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PROJECT SUMMARY/ABSTRACT In the United States, an estimated 5.4 million persons are affected by Alzheimer's disease, the most common cause of dementia. The complications of dementia include falls, aspiration pneumonia, and problem behaviors such as irritability, agitation, and aggression. Much of the burden of managing these complications lands upon caregivers, who provided an estimated 18.1 billion hours of unpaid care in 2015 and developed high or very high emotional stress of caregiving (nearly 60%) and depression (40%). Interventions developed to decrease the negative aspects of caregiving have focused on training caregivers on strategies to manage behavioral symptoms, enhancing caregiver social support, and providing respite. Multi- component interventions that longitudinally engage multiple family members to provide ongoing assistance as the disease progresses have been most effective at reducing caregiver strain. The UCLA Alzheimer's and Dementia Care (ADC) program, fully implemented in 2012, partners with community-based organizations to provide comprehensive, coordinated, patient-centered care for patients with Alzheimer's disease and other dementias. The goals of the program are to maximize patient function, independence and dignity, minimize caregiver strain and burnout and reduce unnecessary costs through improved care. As of November 2016, the program has served over 1900 participants and their caregivers. Based on the initial 1-year outcomes data, participating caregivers were better able to care for patients with dementia. They had received significantly more advice about dementia care and have significantly higher self- efficacy about managing the disease. As a result, despite disease progression, caregiver depression scores, distress related to behavioral symptoms, and caregiver strain improved by 25%, 24%, and 11%, respectively. The proposed research will extensively evaluate the effectiveness of the UCLA ADC on caregiver and patient outcomes and the costs associated with improving outcomes for the first 1091 participants in the program. Although in aggregate caregivers and patients demonstrated clinical benefits, these benefits were not accrued by every caregiver. The research will focus on determining characteristics of caregivers who benefit (defined as low or improved distress, strain, or depression) from participation in the program. It will also conduct a cost analysis focusing on cost per benefit as defined above. This information will be used to improve the program. This formal evaluation of the caregiver effectiveness of a successful clinical program focused on Alzheimer's disease and other dementias will provide important information about how best to support caregivers.