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.