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., 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 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.