PERSEVERE in Lewy Body Dementia: A Randomized, Controlled Trial of Peer Mentor Support and Caregiver Education

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PROJECT SUMMARY/ABSTRACT Lewy Body Dementia (LBD) is the second most common form of degenerative dementia, affecting at least 2.4 million people in the US, and the overwhelming majority of persons living with LBD (PLBD) are cared for by family caregivers. LBD caregiver strain: 1) exceeds that of non-LBD dementia caregivers; 2) worsens caregiver physical and mental health; and 3) independently increases the risk of PLBD hospitalization and institutionalization. LBD progression is complicated by the synergistic effects of motor, cognitive, and neuropsychiatric decline, and is punctuated by falls, infections, dehydration, and neuropsychiatric symptoms leading to acute healthcare utilization. Although family caregivers are uniquely positioned to identify and manage these challenges, which may avert emergency department visits and reduce morbidity, many caregivers lack the knowledge, skills, confidence, resources, and support to do so. NIA recognizes the gap in enhancing the knowledge and skills of dementia caregivers and the critical need to understand optimal intervention structure, content, mechanisms, and delivery methods for caregiver interventions. Building on our team’s recruitment successes and prior work impacting caregiver strain and PLBD quality of life, the proposed study addresses these gaps using our successfully piloted, peer mentor-delivered educational intervention for LBD caregivers (PERSEVERE). The study aims to 1) quantify the impact of PERSEVERE on caregiver knowledge, attitudes, mastery, and strain; 2) identify the intervention and mentor factors determining implementation fidelity; and 3) test the effects of PERSEVERE on PLBD quality of life and healthcare utilization. These aims will be accomplished in an NIH Behavioral Model Stage II (efficacy) national, randomized, attention-controlled, 12-week trial of PERSEVERE in 502 LBD caregivers in partnership with the Lewy Body Dementia Association, Parkinson’s Foundation, Davis Phinney Foundation, and LBD Caregiver Advisors. We will match caregivers in the intervention arm with a trained peer mentor who will coach them through a modular, practical, theory-based curriculum covering LBD knowledge and social support topics. Caregivers in the attention control condition will receive weekly, curated links to educational materials only. We will identify immediate and delayed intervention effects, including mediators of caregiver strain at twelve weeks, and caregiver strain and PLBD outcomes at nine months. PLBD healthcare utilization and implementation fidelity will be assessed biweekly. Focus groups with mentors and interviews with mentees will further define the intervention- and mentor-specific factors predicting fidelity, mentee outcomes, and retention. Remote recruitment, mentoring, and assessments incorporate community engagement strategies to ensure maximum accessibility and inclusion of underrepresented caregiver groups. Study results will illuminate the extent to which leveraging prior LBD caregivers as expert interventionists can improve current caregiver outcomes, and in turn, PLBD outcomes. These results will inform future adaptation and dissemination of this model for other dementia caregivers.