Evaluate the effects of PERSEVERE—a national virtual randomized controlled trial of a 12-week peer mentor-supported intervention—on family caregiver knowledge, attitudes, and strain, and on quality of life and healthcare utilization for care recipients with Lewy Body Dementia (LBD).

Family caregivers of people living with LBD (PwLBD) experience significant strain and adverse health outcomes. Effective LBD caregiver interventions are needed. Building on positive pilot work, we hypothesized that a peer mentor-delivered, LBD-specific modular curriculum will significantly improve caregiver and PwLBD outcomes compared to self-directed learning.

Partnering with LBD caregiver advisors and advocacy organizations, 120 seasoned caregivers will be recruited and trained as peer mentors. We will enroll 502 novice LBD family caregivers (PwLBD <3 years’ cognitive symptoms) with random assignment (1:1 in blocks of 100) to weekly mentoring using a specialized LBD curriculum focused on symptoms, crisis management, and caregiver support, or to self-directed learning with pre-existing resources (attention control). Primary outcomes––measured at baseline, 12 weeks (post-intervention), and nine months (follow-up)––are caregiver knowledge and attitudes (12 weeks) and caregiver strain (nine months). Secondary outcomes include frequency and duration of engagement with materials and/or mentor, satisfaction, coverage of recommended topics, future interest in mentoring, and change in PwLBD quality of life (QoL) between baseline and nine months. 

We have enrolled 97 mentors (55 trained) and 139 caregivers. Cohort 1 is ongoing, with 96.7% survey completion rate by week 4. Caregiver mentees report a mean engagement of 49.8 minutes/week and 93.75% satisfaction vs. 41.2 minutes and 86.5% satisfaction in the control group, with strongly positive qualitative feedback among mentees. 

Training peer mentors to deliver a practical, LBD-focused curriculum may improve caregiver and PwLBD outcomes in a cost-effective, scalable manner. PERSEVERE has been met with robust enrollment, early engagement, and satisfaction in both arms, with ongoing recruitment.