The Power Of Peer Mentoring In Parkinson’s: Learning Together, Living Better
I’ve been inspired again and again—through clinic visits, research, and countless conversations—by how people living with Parkinson’s and their care partners often learn best—and may learn the most—from those who have already walked part of the path. That’s the heart of peer mentoring: pairing lived experience with practical know‑how, empathy, and hope.
Over the past several years, our team’s research has centered on caregivers and care partners whose loved ones are living with advanced Parkinson’s Disease (PD), PD Dementia, Dementia with Lewy Bodies, or Lewy Body Dementia. We’ve studied how structured, mentored support (PERSEVERE) can ease isolation, build confidence, and strengthen skills for the challenges that come with caregiving in these conditions . Participants have told us, in their own words, how powerful this can be:
“I am so grateful to have had this experience at this specific time in my caregiving journey. I just can't express how much it has meant. I feel much better prepared and supported this year because of this program. Thank you so much for doing this study. I hope it continues and that I can be a mentor to someone else in the future.”
Another participant captured both the difficulty and possibility of this work:
“To put a positive to this…condition can be transformative. All this is not to say that there will be those moments and days that will continue to be really really hard, but the potential in finding new abilities to manage these moments is and should be considered a gift. The learning can be so painful but so too the resulting realization that our [loved ones’] life experience can be managed. The goal is creating less stress and by so doing, making room for those precious moments to be appreciated even more.”
These reflections echo what we see clinically: the right connection at the right time can change everything. A mentor can normalize common challenges, share strategies that worked (and didn’t!), and offer a kind of understanding that doesn’t require explanation. For care partners, mentorship can also provide breathing room—practical tools to manage stress, communicate with the clinical team, and sustain wellbeing over time.
Co‑Creating What People Truly Need
While our prior and ongoing research has focused on caregivers/care partners to date, we’re actively working to extend peer mentor-led education to people living with PD themselves. If funded, this fully virtual program would be co‑created with participants with PD, beginning with small‑group conversations to identify top priorities (physical symptoms, emotional wellbeing, social connection, planning ahead, and more). We would then update our existing curriculum for caregivers and adapt it to the needs of people with PD themselves, including trustworthy videos, guides, and websites with input from national Parkinson’s organizations and interdisciplinary clinicians. We hope to ultimately pilot the completed program to learn what’s most useful and accessible. The guiding principle is simple: people living with PD are the experts in their own lives. Our job is to listen, learn, and build together. By centering lived experience from the start, we aim to create supports that are practical, credible, and easy to use in real life.
Peer Mentoring as Palliative Support—At Any Stage
I often describe peer mentoring as a form of palliative support—not end‑of‑life care, but a focus on comfort, coping, and quality of life at any stage of PD. Too many people miss out on this kind of holistic support early on, or they encounter resources that don’t reflect day‑to‑day realities. Peer mentoring can fill those gaps with human connection, shared problem‑solving, and resilience that deepens over time. For care partners, it’s a lifeline; for people with PD, it may be an opportunity to learn, adapt, and remain connected to what matters most.
Join the Conversation at the World Parkinson Congress
The future of peer mentoring in Parkinson’s must be shaped by and with the community. That’s why I can’t wait to host a Roundtable on Peer Mentoring at WPC 2026! We will talk a bit about the work our team has done so far, what the current peer mentor-led educational intervention looks like now, and your thoughts on what it could be in the future. This will be a working conversation among people living with PD, care partners, clinicians, researchers, and advocates.
If you join us, you’ll be able to:
Share your experiences with mentoring (or what you wish existed).
Help define priorities for future peer programs—for care partners and, importantly, for people living with PD.
Learn about ongoing and upcoming opportunities to participate in studies and programs.
Connect with others who believe that we are stronger together.
Help build a pipeline of people who have walked this path and want to turn their lived wisdom into a better experience for those will follow in their footsteps.
Be Part of What Comes Next
If you’re curious about peer mentoring, interested in participating in future research, or eager to help build programs like PERSEVERE‑PD, I would love to hear from you—and to see you at the WPC Roundtable. Your ideas and lived expertise can directly influence how we design, test, and scale peer mentoring supports so that every person with PD and every care partner has access to the mentorship, solidarity, and practical tools they deserve. Let’s learn together!
Jori Fleisher, MD, MSCE, FAAN is a fellowship-trained, movement disorders neurologist with a special interest in understanding the needs of individuals and families who are living with advanced Parkinson’s disease and related disorders. She works at Rush University Medical Center Parkinson’s disease and Movement Disorders Program in Chicago. She is a member of the WPC 2026 Program committee, she has attended and spoken at past Congresses and will be speaking at the WPC 2026.
Ideas and opinions expressed in this post reflect that of the authors solely. They do not necessarily reflect the opinions or positions of the World Parkinson Coalition®