The Michael J. Fox Foundation Launches New Guide, "Navigating Cognitive Changes in Parkinson's Disease" to Fill Knowledge Gaps and Encourage Dialogue on Under-Addressed Symptom
NEW YORK, Sept. 12, 2019 /PRNewswire/ -- As part of its mission to provide the Parkinson's community with high-quality resources on every aspect of the disease, The Michael J. Fox Foundation for Parkinson's Research (MJFF) today launches "Navigating Cognitive Changes in Parkinson's Disease." The new guide, available at michaeljfox.org/cognitionguide, educates patients and families about potential thinking and memory symptoms in Parkinson's, provides practical strategies to work through cognitive changes, and shares the latest research and therapies.
Guide Developed in Collaboration with Parkinson's Experts
"Navigating Cognitive Changes in Parkinson's Disease" was written by MJFF Vice President of Medical Communications and movement disorder specialist Rachel Dolhun, MD. The guide was developed in collaboration with experts — patients and families who live with Parkinson's and the clinicians who care for them. Through three working groups comprised of MJFF's Patient Council, care partners, social workers, and movement disorder and cognitive physicians, the Foundation assembled varied perspectives and expertise to source guide topics, themes, and tips. Care partners also completed a questionnaire to shed light on the challenges experienced by families living with dementia.
"I regularly hear from patients that dementia is one of the most worrisome symptoms of Parkinson's. And yet, we don't talk about it enough," said Rachel Dolhun, MD. "The goal of this guide is to encourage people with Parkinson's and their loved ones to learn more about cognitive changes and to take action — whether that's opening a discussion to lessen fear and improve care or practicing healthy habits to boost brain health. There's a lot you can do today about cognitive changes."
In the comprehensive 33-page guide, patients and families can explore:
The free guide is available to download at michaeljfox.org/cognitionguide. A webinar, featuring Dr. Dolhun and Parkinson's community members and experts, also will be available on Thursday, September 19. Register for the free webinar here.
"Navigating Cognitive Changes in Parkinson's Disease" was made possible by The Albert B. Glickman Parkinson's Disease Education Program, whose support allows MJFF to furnish high-quality educational content for the Parkinson's community while preserving its track record of efficiency in stewarding donor-raised contributions for high-impact research.
About Cognitive Changes in Parkinson's and the State of Research
Not everyone with Parkinson's disease (PD) will experience thinking and memory changes. Estimates vary, but of the 6 million people who live with the disease worldwide, 40 percent may be affected by dementia and 25 percent may experience milder cognitive changes. Our population is aging, and according to a 2018 study, the global Parkinson's prevalence is projected to double by 2040. With an expected increase in the number of people affected by PD, resources to better understand and navigate PD cognitive changes are urgently needed.
"Many of us with Parkinson's have had moments of losing our car keys, but what about leaving the burners on? What's Parkinson's, and what's normal aging?," said Dave Iverson, broadcast journalist and founding MJFF Patient Council member. "More information is empowering. The Patient Council welcomed the opportunity to provide input on this new guide in order to offer families the knowledge and resources to talk about a sensitive topic that's sometimes inadequately addressed at home or even in the doctor's office."
The Michael J. Fox Foundation is committed to helping patients and families navigate everyday life with Parkinson's disease and connect to ongoing research through practical, educational, and accessible resources. Stigma and misperceptions about Parkinson's and its symptoms can hinder much-needed research into understanding the disease and how to treat and, ultimately, prevent it. Education catalyzes participation in clinical trials and speeds progress.
Researchers are working to better understand, measure, and treat cognitive changes and dementia in Parkinson's. Since its inception in 2000, MJFF has funded approximately $39 million in cognition and dementia research across Parkinson's and related disorders. The Foundation's online clinical trial matching platform, Fox Trial Finder (www.foxtrialfinder.org), which connects volunteers with studies that urgently need them, lists more than 100 studies investigating cognitive deficits. And through MJFF's Parkinson's Progression Markers Initiative, nearly 1,400 participants — with and without Parkinson's — have contributed data through regular cognitive assessments, giving researchers critical information on cognition and PD.
Investigators also are comparing Parkinson's disease dementia to Alzheimer's and other types of dementia to better distinguish and treat these conditions. Biomarkers Across Neurogenerative Disease (BAND) — a partnership between MJFF, the Alzheimer's Association, Alzheimer's Research UK, and the Weston Brain Institute — has funded more than $3 million to 20 international grants to enhance dementia research and care.
"As the population ages and the number of people impacted by Parkinson's increases, so does the need to open a dialogue about one of the most troubling aspects of the disease," said Todd Sherer, PhD, MJFF's CEO. "More resources, research, and collaboration can help us address the complex issue of cognitive decline and support people who experience it. Our Foundation continues to deploy strategic investments to advance scientific breakthroughs for the next generation of Parkinson's treatments."
About The Michael J. Fox Foundation for Parkinson's Research
As the world's largest nonprofit funder of Parkinson's research, The Michael J. Fox Foundation is dedicated to accelerating a cure for Parkinson's disease and improved therapies for those living with the condition today. The Foundation pursues its goals through an aggressively funded, highly targeted research program coupled with active global engagement of scientists, Parkinson's patients, business leaders, clinical trial participants, donors and volunteers. In addition to funding more than $850 million in research to date, the Foundation has fundamentally altered the trajectory of progress toward a cure. Operating at the hub of worldwide Parkinson's research, the Foundation forges groundbreaking collaborations with industry leaders, academic scientists and government research funders; increases the flow of participants into Parkinson's disease clinical trials with its online tool, Fox Trial Finder; promotes Parkinson's awareness through high-profile advocacy, events and outreach; and coordinates the grassroots involvement of thousands of Team Fox members around the world.
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SOURCE The Michael J. Fox Foundation for Parkinson’s Research