2025 American Academy of Neurology Abstract Website

Wdasie Ayele¹, Jessica Hemm¹, Sarah Mitchell-Chen¹, Evelyn Stevens⁵, Elizabeth Rachchh⁶, Angela Taylor⁶, Keith Fargo⁶, Diane Mariani⁴, Sandhya Seshadri⁷, Cintra Bentley², Thomas Manak², Allegra Miller², Claire Pensyl², Carmen Pierce², Margaret Voss², Bichun Ouyang³, Joshua Chodosh⁸, Jori Fleisher¹
¹Neurological Sciences- Section of Movement Disorders, ²Lewy Body Dementia Caregiver Advisory Panel, ³Neurological Sciences, Rush University Medical Center, ⁴Rush University Medical Center, ⁵Parkinson's Foundation, ⁶Lewy Body Dementia Association, ⁷Neurology, University of Rochester Medical Center, ⁸NYU Grossman School of Medicine

Objective:

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).

Background:

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.

Design/Methods:

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.

Results:

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.

Conclusions:

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.