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Parkinson's Foundation Study Finds Gender Disparities in Caregiving, with Women at a Disadvantage

Largest Clinical Study Tracking Parkinson’s Patients Over Time Shows Women with Parkinson’s Have Fewer Caregiving Resources than Men with Parkinson’s

NEW YORK & MIAMI — A Parkinson’s Foundation study published in the December 1, 2017 issue of Neurology, the medical journal of the American Academy of Neurology, reveals that women with Parkinson’s disease have significantly less access to caregiving support than men with the disease. Specifically, the study – the largest clinical study tracking Parkinson’s patients over time – shows that women with Parkinson’s tend to lack much-needed support from informal caregivers such as spouses, family members and paid health aides.

“This caregiver study uses data from our Parkinson’s Outcomes Project, the largest clinical study of Parkinson’s ever, and shows that women are less likely to list their spouse as their care partner and twice as likely as men to have a paid caregiver,” said Peter Schmidt, Ph.D., Chief Research and Clinical Officer for the Parkinson’s Foundation and an author on the study. “As Parkinson’s advances, care becomes complex and having a care partner, whether a family member or a paid health aide, becomes an important part of optimal management of the disease.”

Researchers evaluated annual data on approximately 7,000 participants receiving care at 21 Parkinson’s Foundation Centers of Excellence across four countries as part of the Parkinson’s Outcomes Project. According to the study, men more frequently reported having regular caregivers and more frequently had their caregivers accompany them to their visits. 20% of women reported having no care partner at all. 84% of men identified a spouse as the primary caregiver compared to only 67% of women. Furthermore, caregivers of women with Parkinson’s reported lower strain than those of men.

Lead study author Nabila Dahodwala, M.D., MS, from the University of Pennsylvania, a Parkinson’s Foundation Center of Excellence, says these findings are significant because informal care is a vital component of the care that people with Parkinson’s receive. Understanding how to best provide this day-to-day care, especially to women, will help improve the quality of life for those living with Parkinson’s.

“The Parkinson’s Foundation recently established the Women and PD Initiative to address significant gender differences in the experience of Parkinson’s,” said John L. Lehr, Chief Executive Officer of the Parkinson’s Foundation. “With this Parkinson’s Foundation-supported study, we are shedding light on and finding solutions for women-specific issues to help improve the health and wellbeing of women living with Parkinson’s.”

The goal of the Parkinson's Outcomes Project is to continue to identify best care practices for Parkinson's that could help get better care to more people affected by the disease. For more information about the study, visit www.parkinson.org/outcomes.

About the Parkinson’s Foundation
The Parkinson’s Foundation makes life better for people with Parkinson’s disease by improving care and advancing research toward a cure. In everything we do, we build on the energy, experience and passion of our global Parkinson’s community. For more information, visit www.parkinson.org or call (800) 4PD-INFO (473-4636).

About Parkinson’s Disease
Affecting an estimated one million Americans and 10 million worldwide, Parkinson’s disease is the second-most common neurodegenerative disease after Alzheimer’s and is the 14th-leading cause of death in the United States. It is associated with a progressive loss of motor control (e.g., shaking or tremor at rest and lack of facial expression), as well as non-motor symptoms (e.g., depression and anxiety). There is no cure for Parkinson’s and 60,000 new cases are diagnosed each year in the United States alone.

Monday, December 4, 2017
The National Parkinson Foundation Awards Four Innovative Research Grants
Wednesday, November 4, 2015

One Million Dollar Investment in Clinical Research in Parkinson’s Disease

MIAMI — The National Parkinson Foundation (NPF) announced today that it has funded four new grants in Parkinson’s disease (PD) research. The four grants target key scientific questions about gender differences in Parkinson’s, cognition and inflammation.

Should Patients and Families Be Considering Tasigna (Nilotinib) Therapy for Parkinson’s Disease? The NPF Recommends Further Study but Not Clinical Use of this Investigational Drug
Wednesday, October 21, 2015

Tasigna (Nilotinib) is a leukemia drug that has recently been tested for safety in a small, phase I clinical trial on about a dozen Parkinson’s disease patients. The study had positive results that certainly warrant the continuation to a phase II trial, however it is too early for patients to seek treatment outside the setting of a clinical trial. The study was very small, and it was not placebo controlled.

NatGeo to Air Live Parkinson's DBS Surgery: What Should You Know?
Tuesday, October 20, 2015

The Parkinson’s Disease Foundation (PDF) has learned that later this week, the National Geographic Channel will air a live television broadcast of deep brain stimulation surgery for Parkinson’s disease (PD).

Parkinson's Disease Foundation and American Parkinson Disease Association Collaborate to Cultivate Future Parkinson's Scientific Leaders
Thursday, October 15, 2015

The Parkinson's Disease Foundation® (PDF®) and the American Parkinson Disease Association (APDA) are pleased to announce their collaboration on Summer Student Fellowships to support research that will help solve, treat and end Parkinson's disease.

PDF Research Advocates Highlight Unmet Needs in Parkinson’s at FDA Meeting
Tuesday, September 29, 2015

The Parkinson’s Disease Foundation (PDF) is pleased to report that five of its Research Advocates represented the community at last week’s Food and Drug Administration’s (FDA) Patient-Focused Drug Development meeting on Parkinson’s Disease in Silver Spring, MD.

National Parkinson Foundation Ohio Chapter Now Serves Entire State
Monday, September 21, 2015

Moving Day® Cleveland, A Walk for Parkinson’s, Slated for June 2016

Columbus — The National Parkinson Foundation (NPF) Central & Southeast Ohio Chapter has officially changed its name to National Parkinson Foundation Ohio. The name change signifies the expansion of service statewide to the approximately 30-50,000 Ohioans with Parkinson’s disease (PD). 

Parkinson's Disease Foundation Mobilizes Community to Address Unmet Needs of Women Living with Parkinson’s
Wednesday, September 16, 2015

The Parkinson's Disease Foundation® (PDF®) is pleased to launch its Women and PD Initiative, the first national coordinated effort dedicated to improving the health and well-being of women living with Parkinson’s disease. The initiative launches this week with a three-day conference in Florham Park, NJ.

Parkinson's Disease Foundation Highlights Under-recognized Aspects of Disease with New Online Educational Series
Tuesday, September 15, 2015

The Parkinson's Disease Foundation® (PDF®) is pleased to announce the launch of its latest series of PD ExpertBriefings — six free online seminars designed to shed light on under-recognized aspects of Parkinson's disease. The series, presented by leaders in Parkinson's research and care, begins today, Tuesday, September 15 at 1:00 PM ET.

PDF-Funded Research Paves the Way to Phase III Drug Trial
Wednesday, September 2, 2015

The Parkinson’s Disease Foundation (PDF) is pleased to announce that research initially launched with PDF funding will be tested in a phase III clinical trial opening in 2016. The study, which two of PDF’s volunteer Research Advocates are helping to oversee, is assessing the potential of the nutritional supplement inosine for the treatment of Parkinson’s disease.

The National Parkinson Foundation’s Medical Director Publishes New Book on Breakthrough Therapies for Parkinson’s Disease
Monday, August 31, 2015

Sequel to 2013 Bestseller, “Parkinson’s Treatment: 10 Secrets to a Happier Life”

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