Substantial Matters: Life & Science of Parkinson’s

Caring for Loved Ones with Parkinson’s Disease


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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.

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Substantial Matters: Life & Science of Parkinson’sBy Parkinson’s Foundation

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