Session Information
Date: Monday, September 23, 2019
Session Title: Caregiver Burden
Session Time: 1:45pm-3:15pm
Location: Les Muses Terrace, Level 3
Objective: To describe the design and implementation of a novel caregiver peer mentoring program for caregivers of patients with advanced PD.
Background: As PD progresses, patients may become homebound and require intensive caregiving at home to avoid institutionalization. Caregivers shoulder a heavy emotional, physical, and financial burden, and escalating caregiver strain increases institutionalization risk. Institutionalized PD patients have excessive morbidity and mortality rates. As the advanced PD population continues to grow, mitigating caregiver burden is imperative. Preliminary studies in Alzheimer’s Disease suggest that pairing current caregivers with an experienced, past caregiver “peer mentor” may improve caregiver strain and confidence. Peer mentoring programs have not been studied among PD caregivers.
Method: Share the Care is part of IN-HOME PD/K23NS097615, investigating the impact of quarterly interdisciplinary hybrid in-home/telehealth visits to homebound patients with advanced PD. Mentees are part of a caregiver-patient dyad enrolled in IN-HOME PD. Share the Care mentors are volunteers that either have or are currently caring for a loved one with advanced PD or a related disorder. Mentees and mentors agree to weekly in-person, telephone, or videoconference meetings over a 4-month period. Mentors receive in-person training including review of a structured curriculum of weekly topics. Primary outcomes include mentor and mentee anxiety and depression; secondary outcomes include mentee caregiver strain and self-efficacy alongside time spent, topics covered, and mentee satisfaction.
Results: The program is currently underway, with 34 mentors trained and 19 out of 60 planned mentor-mentee pairs currently active or recently completed. Mentoring curriculum, implementation, and interim data analysis will be presented.
Conclusion: The findings will contribute to the dearth of knowledge regarding efficacious and cost-effective approaches to improving caregiver strain among people with advanced PD.
To cite this abstract in AMA style:
J. Lee, E. Wallace, C. Niemet, S. Hess, B. Ouyang, J. Wilkinson, D. Hall, J. Chodosh, J. Fleisher. Share the Care: Supporting Parkinson’s Disease Caregivers Through Peer Mentoring [abstract]. Mov Disord. 2019; 34 (suppl 2). https://www.mdsabstracts.org/abstract/share-the-care-supporting-parkinsons-disease-caregivers-through-peer-mentoring/. Accessed June 14, 2025.« Back to 2019 International Congress
MDS Abstracts - https://www.mdsabstracts.org/abstract/share-the-care-supporting-parkinsons-disease-caregivers-through-peer-mentoring/