A Partner to Care Partners: Promoting the Best Quality of Life for Individuals With Advanced Disease and the People Who Love Them Jori Fleisher, MD, MSCE, FAAN, receives federal grant to advance research launched by philanthropy to improve life for patients and their care partners
Through successes and struggles, everyone needs a strong support system to rely on.
also experience a better quality of life. For years, Dr. Fleisher and her team have piloted a novel model of care involving interdisciplinary home visits for people with advanced Parkinson’s disease and peer mentoring for caregivers.
For people diagnosed with Parkinson’s disease and those who serve as their care partners, support is essential but often hard to find. The experiences of the disease — particularly nonmotor symptoms such as cognitive changes, difficulty sleeping, depression, anxiety, apathy, hallucinations, pain and weight loss — can surface feelings of isolation and overwhelm.
In August 2023, Dr. Fleisher’s efforts were rewarded with a prestigious Research Project Grant, or R01, from the National Institutes of Health for her project “PERSEVERE in Lewy Body Dementia: A Randomized, Controlled Trial of Peer Mentor Support and Education” to study the impact of caregiver peer mentorship on a larger scale over the next five years.
In the words of Jori Fleisher, MD, MSCE, FAAN, associate professor in the Department of Neurological Sciences and one of the field’s most passionate advocates for people with Parkinson’s disease and their caregivers: The calvary isn’t coming.
“It’s beyond humbling and still a little hard to believe,” Dr. Fleisher said. “Going into medicine, I always thought that I would be a clinician or maybe a clinician educator. I never thought that I was a researcher. To be able to do projects that, to me, feel directly related to giving back and having a tangible benefit to patients and families — and to have that funded by the NIH at a level that’s comparable with basic science research — is such a validation of this work. It centers caring for people and putting their needs front and center.”
But this is exactly the challenge Dr. Fleisher has devoted her career to solving. Driven by personal experiences with family members affected by neurologic diseases and the individual experiences of the patients she treats, Dr. Fleisher seeks to implement, improve and widely distribute programs that improve the lives of people with Parkinson’s disease, other movement disorders and their care partners. She strives to equitably expand access to quality care for those who are homebound or in later stages of the disease and ensure patients’ individual goals and wishes are achieved.
Advancing the caregiver peer mentoring model The PERSEVERE study builds on Dr. Fleisher’s previous donor-funded work to help people living with advanced Parkinson’s disease, people with Lewy body dementia, or LBD, and their caregivers manage the significant burdens they face. The national study will evaluate the efficacy of an
Integral to Dr. Fleisher’s approach is the idea that when caregivers are cared for, people with Parkinson’s disease
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