[Webinar Recording] The Loop of Care with Dr. Jori Fleisher

Parkinson's Care Partner Research - Davis Phinney Foundation

Do you struggle with social isolation as a Parkinson’s care partner? In this interview, Dr. Jori Fleisher discusses her research into the benefits of in-home visits by specialists and peer mentoring for care partners.

You can read the transcript by clicking here.

Note: This is not a flawless, word-for-word transcript, but it’s close.

Show Notes

Falling “out of the Loop of care”

Dr. Fleisher’s research has explored how to help people with Parkinson’s improve their quality of life if they are homebound or have fallen out of contact with their care team. Dr. Fleisher calls this being “out of the loop of care.”

There are many reasons a person may fall out of contact with their care team, therefore leaving their “loop of care”. For example, there may be practical limitations like financial difficulties or complications in accessing suitable transportation to visits, and the progression of Parkinson’s can influence both of these factors. These issues may also cause people with Parkinson’s to never connect with a Parkinson’s specialist at all.

Why is connecting with people outside the “loop of care” important?

In Dr. Fleisher’s early research on the homebound and “out of the loop of care” population, she and her team collected a list of people who had been seen at a Parkinson’s clinic but had subsequently been out of contact for an extended period. The team visited these people at home four times over a year. The home visits included multiple Parkinson’s surveys and evaluations. The team found that throughout the four visits, ratings for mobility, cognition, depression, and anxiety worsened, but the team also found that the ratings for quality of life did not worsen. This is unusual compared to Parkinson’s-related studies that typically found that quality of life is rated lower as Parkinson’s symptoms worsen.

In a follow-up study—the IN-HOME-PD study—Dr. Fleisher’s team added a control group by matching people they would visit at home with people with comparable demographic information from a database of people with Parkinson’s who had participated in a previous study. Dr. Fleisher and her team were excited to find that the home visits had another surprising influence on quality of life. In the IN-HOME-PD study, the group of people who received home visits tended to start with a worse bodily discomfort score—41.5 compared to 36.7 in the control group—but by the end of the series of visits, the home visit group’s bodily discomfort scores were better than what the control group had even started at. This indicates to Dr. Fleisher that there are many ways to “move the needle” and help people with Parkinson’s improve their quality of life.

Dr. Fleisher’s research is also important because we know that people with Parkinson’s who do not access medical care from Parkinson’s specialists tend to be underrepresented in Parkinson’s research. This underrepresentation leads to a gap in the understanding of Parkinson’s; we understand more about the early and severe states of Parkinson’s, but we understand comparably little about the experience of those just beginning to enter the advanced stages of Parkinson’s.

Care Partners in Dr. Fleisher’s Initial Research

Dr. Fleisher’s home visit studies also collected information from care partners. Care partners provide at-home and out-of-clinic care support for over 83% of people with Parkinson’s. These family care partners experience high levels of personal strain, burden, and depression. And unfortunately, having a care partner who experiences these feelings increases the likelihood that a person with Parkinson’s will be hospitalized or placed in an assisted living environment.

In light of these facts, after recognizing that their home visit program benefited people with Parkinson’s, Dr. Fleisher’s team evaluated care-partner-reported strain levels throughout their initial study. They found that among this group of care partners caring for people with advanced Parkinson’s, strain increased from mild to moderate over the year that the in-home visits were conducted. This finding suggested to the study team that family care partners need more support than even the four annual at-home visits they received from the health professionals.

What support might help care partners?

Considering the challenges expressed by care partners in their initial study, Dr. Fleisher’s team added peer mentoring for care partners during the IN-HOME-PD study. Those who participated in peer mentoring had high satisfaction with the mentoring experience. Importantly, their levels of reported personal strain also stabilized throughout the study.

Dr. Fleisher’s team then expanded their peer mentoring program. This expansion included training new mentors, recruiting new care partner mentees, and doing a focus group review and revision of the program. All participants found the calls helpful and would recommend the program to other care partners.

The results were encouraging. There were improvements in care partner depression scales for mentees in the program. Moreover, care partners from both the mentor and mentee groups increased their knowledge about Parkinsonism. Perhaps most significantly, 90% of mentors said they would like to return to the program, and 50% of mentees said that they’d like to be mentors, even while continuing to care for their family member.

Dr. Fleisher’s team is planning a more extensive study to increase understanding of how to improve outcomes for Parkinson’s care partners.

The Social Isolation Problem

Social isolation is associated with worse outcomes for people with Parkinson’s, and Dr. Fleisher’s research suggests that this is true for Parkinson’s care partners as well.

It can be easy to feel isolated when navigating life with Parkinson’s, but connecting with others who may have similar experiences can help alleviate stress and increase understanding. For example, consider joining our monthly care partner meetup, contacting one of our care partner ambassadors, or joining a local care partner support group.

Additional Resources

Davis Phinney Foundation Care Partner Monthly Meetup

Davis Phinney Foundation Ambassadors

How to Build Your Care Partner Care Team

In-Home-PD Study Report

Synergy of Pandemics—Social Isolation is Associated with Worsened Parkinson Severity and Quality of Life

Interdisciplinary Palliative Care for People with Advanced Parkinson’s: A View from the Home

Disease Severity and Quality of Life in Homebound People with Advanced Parkinson’s

AARP Applauds Executive Order on Family Caregivers, Early Educators, and Long-term Care Workers

FACT SHEET: Biden-⁠Harris Administration Announces Most Sweeping Set of Executive Actions to Improve Care in History

About the Speaker

Dr. Jori Fleisher, MD, MSCE, FAAN

Leslie Nan Burridge Endowed Faculty Scholar in Parkinson’s Disease Research, Associate Professor of Neurological Sciences at Rush University Medical Center

Location: Chicago, IL

Jori Fleisher, MD, MSCE, is the Leslie Nan Burridge Endowed Faculty Scholar in Parkinson’s Research and an associate professor of neurological sciences at Rush University Medical Center. She is a movement disorder neurologist and epidemiologist who leads the Rush Advanced Interdisciplinary Movement Disorders Supportive Care (AIMS) Clinic, the CurePSP Center of Care, and directs the Rush Lewy Body Dementia Association Research Center of Excellence, which was recently ranked as the top Center of Excellence nationally. 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 a movement disorders fellowship. Dr. Fleisher has additional training in health services research, palliative care, and implementation science. Supported by the National Institutes of Health, foundations, and philanthropy, Dr. Fleisher has several studies under way focused on interdisciplinary home visits, telemedicine, interprofessional education, and peer mentoring to improve the lives of people and families living with advanced movement disorders. She collaborates nationally and internationally on several Parkinson’s, PSP, and Lewy Body Dementia-related grants and task forces. She is a graduate of the American Academy of Neurology Emerging Leaders Forum and Palatucci Advocacy and Leadership Forum. She serves on the Editorial Board of the AAN’s patient-facing Brain & Life magazine and has been awarded the 2020 CurePSP Standout Achievement Award and the CurePSP 2020 Inspiration and Innovation to Cure Award.

Thank You to Our 2023 Live Well Today Webinar Series Presenting Sponsors

*While the generous support of our sponsors makes our educational programs available, their donations do not influence Davis Phinney Foundation content, perspective, or speaker selection.

Share this post on social:

To receive our electronic newsletter and other updates, sign up now.

Related Posts

Back to top