Objective: To examine the effects of peer mentoring on caregiving mastery, Lewy Body Dementia (LBD) knowledge, and dementia attitudes among LBD family caregivers.
Background: Few interventions exist for LBD caregivers, despite having higher caregiver strain and costs when compared to Alzheimer’s Disease (AD) caregivers. Peer mentoring models—in which former or experienced caregivers provide one-on-one support to current caregivers—have shown promise in AD and other chronic conditions. We designed and tested a peer mentoring program for LBD caregivers (PERSEVERE).
Method: Mentors (current or former LBD family caregivers, ≥ 2 years’ experience) and mentees (current caregivers, <2 years’ experience) were recruited via a nationally distributed online survey. Mentors underwent a virtual training seminar. Mentors and mentees received a handbook with weekly modules on LBD mastery and support, and were matched into dyads. Mentor-mentee dyads were expected to have weekly calls for 16 weeks, reviewing topics in the handbook and their own LBD caregiving concerns. Primary outcomes: Change in LBD Knowledge Test, Dementia Attitudes Scale, and Pearlin Mastery Scale pre-/post-training for mentors and between baseline and 16 weeks for mentees. Feasibility outcomes: Frequency and duration of calls (biweekly surveys); satisfaction.
Results: We recruited and matched 30 dyads who had a median of 15 calls of 45 minutes’ duration each. Training improved mentors’ LBD knowledge (mean pre-training 55.48 vs. post-training 73.33, p<0.01, score 0-100) and dementia attitudes (122.06 vs. 125.11, p<0.01). Mentees also demonstrated improvements in both LBD knowledge (50 vs. 56.85, p=0.02) and dementia attitudes (104.25 vs. 111.57, p<0.01) from baseline to 16 weeks, without a change in mastery. Dyads reported 100% satisfaction with PERSEVERE and all would recommend it to other LBD caregivers.
Conclusion: This novel caregiver peer mentoring pilot yielded improvements in LBD knowledge and attitudes among both experienced caregiver mentors and current caregiver mentees. Fidelity to and satisfaction with the program were both high. Future directions include a large, randomized controlled trial of PERSEVERE, and potential adaptation of the curriculum for other neurodegenerative conditions.
To cite this abstract in AMA style:
J. Fleisher, F. Akram, S. Hess, M. Levin, D. Dodson, G. Stebbins, M. Tosin, B. Ouyang, J. Chodosh. Learning to PERSEVERE: Efficacy and Feasibility of Peer Mentor Support and Caregiver Education in Lewy Body Dementia [abstract]. Mov Disord. 2022; 37 (suppl 2). https://www.mdsabstracts.org/abstract/learning-to-persevere-efficacy-and-feasibility-of-peer-mentor-support-and-caregiver-education-in-lewy-body-dementia/. Accessed June 15, 2025.« Back to 2022 International Congress
MDS Abstracts - https://www.mdsabstracts.org/abstract/learning-to-persevere-efficacy-and-feasibility-of-peer-mentor-support-and-caregiver-education-in-lewy-body-dementia/