Episode 116: Caring for Loved Ones with Parkinson’s Disease

For many years, Western medicine focused on disease and on keeping people healthy. Then it evolved to view the “whole person,” including the physical, mental, emotional, social, and environmental aspects of one’s functioning. Today’s medicine goes even beyond that model and encompasses the family, especially care partners, who take on so much when caring for a loved one with a chronic disease.

A leading voice in this area is Jori Fleisher, MD, MSCE of Rush University Medical Center in Chicago, who has been developing a peer mentoring program in Parkinson’s and related diseases. In a study she conducted using regularly scheduled home visits for people with advanced neurodegenerative diseases, the researchers found that caregivers’ strain increased from mild to moderate or even to severe over the course of one year. So now she is addressing caregiver needs through a peer mentoring program built into a home visit program, with a research component to it. After a period of training, peer mentors were matched with a mentee and eventually a second mentee over the course of a year. In this episode, Jori reviews what she and her colleagues have learned so far, how they are refining the program, and where they will go from here, including a large, national, randomized trial of the program.

Released: November 2, 2021

Jori Fleisher, MD MSCE is the Leslie Nan Burridge Endowed Faculty Scholar in Parkinson’s Disease Research and an Associate Professor of Neurological Sciences at Rush University Medical Center. She is a movement disorders neurologist who directs the Rush Lewy Body Dementia Association Research Center of Excellence, CurePSP Center of Care, and the Rush Advanced Interdisciplinary Movement Disorders Supportive Care Clinic. Dr. Fleisher received her Master’s of Science in Clinical Epidemiology from the University of Pennsylvania, where she completed neurology and global health equities residencies and movement disorders fellowship. Dr. Fleisher has additional training in health services research, palliative care, and implementation science. Supported by the National Institutes of Health, Parkinson’s Foundation, other foundations, and philanthropy, Dr. Fleisher has research underway focused on interdisciplinary home visits, telemedicine, interprofessional education, and peer mentoring to improve the lives of patients and families living with advanced movement disorders. Additionally, her team studies the physical, emotional, and social benefits of karate in people with Parkinson’s Disease. Dr. Fleisher is a graduate of the American Academy of Neurology Emerging Leaders Forum and Palatucci Advocacy and Leadership Forum, a member of the Lewy Body Dementia Association Scientific Advisory Committee, and a frequent speaker for local and national patient and healthcare professional educational events.