Together In Parkinson's | PERSEVERE Study: Support for Caregivers Navigating Lewy Body Dementia Featuring Dr. Jori Fleisher

PERSEVERE Study: Support for Caregivers Navigating Lewy Body Dementia

In this conversation, Eileen Lynch from the Parkinson's Resource Organization speaks with Dr. Jori Fleisher from Rush University in Illinois about the PERSEVERE Study, which aims to support family caregivers of individuals with Parkinson's disease and Lewy body dementia. Dr. Fleischer shares her personal journey into the field of movement disorders, the challenges faced by caregivers, and the innovative approach of the Persevere Study, which includes peer mentoring and a structured curriculum designed to empower caregivers. The discussion emphasizes the importance of community, support, and practical resources for those navigating the complexities of caregiving of patients with Parkinson's. Learn more about the PERSEVERE Study

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Highlights

00:00 | Introduction to Parkinson's Resource Organization and Dr. Fleisher

05:29 | Understanding the Persevere Study

13:26 | Study Structure and Participation Details

19:38 | Mentorship Dynamics and Cultural Considerations

28:06 | Final Thoughts and How to Get Involved

Takeaways

• Dr. Fleischer's personal experiences shaped her career in movement disorders.

• The Persevere Study addresses the lack of effective interventions for caregivers.

• Caregivers have valuable lived experiences that can inform support programs.

• The study includes a 12-week curriculum tailored for caregivers.

• Peer mentoring is a key component of the Persevere Study.

• Cultural and linguistic considerations are important in caregiver support.

• The study is entirely remote, allowing participation from across the U.S.

• Caregivers can qualify as mentors even if they feel unprepared.

• The program aims to create a supportive community for caregivers.

• Participants are encouraged to reach out for help and resources.

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About Dr. Jori Fleisher

Dr. Fleisher's particular clinical and research interest is more along the lines of people with late-stage Parkinsonism and they're coping with a lot of different symptoms. Both the movement symptoms, the non-motor symptoms, cognitive symptoms, neuropsychiatric symptoms, and their care partners and their families are trying to navigate all of these sort of trade-offs and conflicting issues. She says it is her duty to make sure that patients and caregivers are moving forward, that they are cared for that know they have a team, and that there's always something that can be done. There's just always something that we can do to help, To help you to help your family. 

Dr. Fleisher has the great privilege of leading our AIMS clinic, which is an interdisciplinary clinic that's really unique in the country. And we have a neuropalliative care doctor, we have a nurse, a social worker, the team has a dietician, trainees, and herself. They're bringing all of that expertise literally into the same room at the same time with a patient and family. She says she is fortunate that she gets to work with families and care partners in the clinic space but also in my own research and education. And bridging that gap just fills her with joy and with hope for the future.

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