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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 A mood disorder whose symptoms can include a persistent sad or empty mood, feelings of hopelessness or pessimism, irritability and loss of interest or pleasure in previously enjoyable activities. and anxiety A feeling of nervousness, worried thoughts and physical distress.). 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
Parkinson’s Foundation Designates NewYork-Presbyterian/Columbia, Rush University Medical Centers as Parkinson’s Care ‘Centers of Excellence’
Monday, February 6, 2017

As foundation continues to invest in programs to improve the lives of Parkinson’s patients, designation of new Centers of Excellence further expand expert care network
 

Local Residents to Host Scotch & Sangria for Parkinson’s Research at Sear House in Closter, NJ, on Thursday, March 2
Monday, January 30, 2017

Proceeds From Fourth Annual Helping Hours Event Benefit Parkinson’s Foundation

Parkinson's Foundation Appoints John L. Lehr as Chief Executive Officer
Tuesday, January 10, 2017

 Lehr Charged with Advancing Foundation’s Mission to Accelerate the Science and Care for Parkinson’s Disease
 

The National Parkinson Foundation Announces Initiative to Further Define Stages of Parkinson’s Disease
Monday, January 9, 2017

Currently, there is no one definition of what it means to have advanced Parkinson’s disease
 

Initiative will support the creation of a tool to help physicians assess changes in the disease
 

Apply to the Parkinson’s Foundation People with Parkinson's Advisory Council by Monday, December 19
Monday, November 21, 2016

Are you interested in helping the Parkinson’s Foundation (PF) work toward a world without Parkinson’s? Apply to the People with Parkinson's Advisory Council by Monday, December 19.

In August, the Parkinson’s Disease Foundation and the National Parkinson Foundation merged to form the Parkinson’s Foundation. We are seeking advisors from the community to help us kick off a new and exciting era in the Parkinson’s community.

The Parkinson’s Foundation Celebrates the Life of Janet Reno
Monday, November 7, 2016

MIAMI and NEW YORK — Today we mourn the loss and celebrate the life of Janet Reno, a longtime friend of the Parkinson’s Foundation. Ms. Reno passed away at age 78 from complications of Parkinson’s disease. She was diagnosed in 1995, while still serving as the first female Attorney General of the United States. Despite her diagnosis, Ms. Reno continued in this role until 2000.

National Parkinson Foundation Expands Expert Care Network in Italy
Wednesday, November 2, 2016

MIAMI — The National Parkinson Foundation (NPF), a division of the Parkinson’s Foundation, announced today a new partnership with the Fresco Institute Italia to improve the quality of Parkinson’s care in Italy. The NPF Center of Excellence global network embodies the world’s leading Parkinson’s specialists focused on changing the course of Parkinson’s disease (PD). 

U.S. Senator Cory Booker Serves as Grand Marshal of Moving Day® Miami
Tuesday, November 1, 2016

MIAMI — The National Parkinson Foundation is pleased to announce that U.S. Senator Cory Booker (NJ) will serve as the Grand Marshal of the 5th Annual Moving Day Miami, the foundation’s walk to raise awareness of Parkinson’s disease in South Florida. The event, presented by Terranova Corporation, begins at 9 a.m.

PDF Champion to Host 14th Annual Music for Parkinson’s Research Concert on Sunday, November 13 in Rye, NY
Monday, October 24, 2016

White Plains, NY, clinical psychologist David Eger, Ph.D., is on a mission to help end Parkinson’s through music.  The 14th annual Music for Parkinson’s Research concert, which benefits the Parkinson’s Disease Foundation’s (PDF) research programs, will take place on Sunday, November 13 at 3:30 PM at the Congregation Emanu-El in Rye, NY.  The chamber music concert is organized by Dr.

PDF Recognizes Scholars of Edmond J. Safra Visiting Nurse Faculty Program for Outstanding Efforts in Nursing Education
Wednesday, October 19, 2016

The Parkinson’s Disease Foundation (PDF) congratulates Laura Kelly, Ph.D., R.N., A.N.P.-C., and Cheryl Leiningen, D.N.P., R.N., A.N.P.-C., Scholars of The Edmond J. Safra Visiting Nurse Faculty Program at PDF and 2016 recipients of the program’s annual Alumni Award for outstanding work in nursing education. Drs.

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