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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
Parkinson's Disease Foundation to Host Celebrate Spring New York on Thursday, April 7
Friday, March 18, 2016

The Young New Yorkers for the Fight Against Parkinson’s and the Parkinson’s Disease Foundation® (PDF®) will hold its ninth annual Celebrate Spring New York at Marquee located at 289 10th Avenue between 26th and 27th Streets in New York City on Thursday, April 7, 2016.   Proceeds from the evening will support PDF’s research programs.

PDF Champions Raise More Than $35,000 for Parkinson’s Research at Martinis & Bellinis Event
Monday, March 7, 2016

Norwood, NJ, resident Stephanie Goldman-Pittel and her fellow co-chairs from nearby communities raised more than $35,000 to benefit the Parkinson’s Disease Foundation (PDF) at Martinis & Bellinis, their third annual PDF Helping Hours event on March 3. More than 100 guests attended the event held at Harvest Bistro & Bar in Closter, NJ, to support Parkinson’s research.

Parkinson's Disease Foundation Launches Online Course for Occupational Therapy Practitioners
Tuesday, March 1, 2016

The Parkinson's Disease Foundation® (PDF®) is pleased to launch a new online course, Occupational Therapy: Across the Parkinson's Disease Continuum, to prepare occupational therapy practitioners who are caring for the growing population of people living with Parkinson's disease.

Parkinson's Disease Foundation Invests in Next Generation of Nursing Leaders
Wednesday, February 24, 2016

The Parkinson's Disease Foundation® (PDF®) is pleased to announce eight new training opportunities for nursing faculty as part of The Edmond J. Safra Visiting Nurse Faculty Program at PDF. The program improves nursing care in Parkinson's disease (PD) by training nurse faculty leaders who in turn, prepare their students to fight the disease on the front lines.

PDF Champions to Host Martinis & Bellinis for Parkinson’s Research at Harvest Bistro & Bar in Closter, NJ, on Thursday, March 3
Tuesday, January 26, 2016

WHAT:  Norwood, NJ, resident Stephanie Goldman-Pittel is inviting her community to Harvest Bistro & Bar in Closter, NJ, for post-work cocktails to support the Parkinson’s cause. She and her fellow co-chairs from nearby communities are hosting Martinis & Bellinis, their third annual Helping Hours event to benefit the Parkinson’s Disease Foundation (PDF) on Thursday, March 3 from 7:00 PM to 10:00 PM.

PDF Mourns the Passing of Joel Gerstel
Tuesday, January 26, 2016

The Parkinson’s Disease Foundation (PDF) mourns the loss of Joel Gerstel, a long-time friend and partner in the Parkinson’s community. Mr. Gerstel, who served as President and CEO of the American Parkinson Disease Association (APDA) until 2012, passed away on January 21 at the age of 80.

NPF and PDF Sign Letter of Intent to Merge
Monday, January 25, 2016

John W. Kozyak, Chair of the Board of the National Parkinson Foundation (NPF) and Howard D. Morgan, Chair of Board of the Parkinson’s Disease Foundation (PDF), released the following statement today:

The National Parkinson Foundation’s Moving Day® Walks Fund $1.25 Million in Parkinson’s Programs in 2015
Monday, December 14, 2015

MIAMI — The National Parkinson Foundation (NPF) is proud to announce that Moving Day®, A Walk for Parkinson’s, has funded $1.25 million in mission services in 2015 to make life better for people living with Parkinson’s.

The National Parkinson Foundation Answers 50,000 Helpline Calls
Monday, November 23, 2015

MIAMI — The National Parkinson Foundation (NPF) announced today that their toll-free Helpline, 1-800-4PD-INFO, has achieved a major milestone: the Helpline reached its 50,000th caller.

The Edmond J. Safra National Parkinson’s Wellness Initiative Expands to Chicago and Tampa
Tuesday, November 10, 2015

National Initiative to Improve the Quality of Life for People with Parkinson’s
 

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