New report from The National Alliance for Caregiving, in partnership with The Michael J. Fox Foundation and Arcadia University, examines complexities of Parkinson's caregiving and outlines reform strategies
WASHINGTON, Feb. 3, 2025 -- A report released today by The National Alliance for Caregiving (NAC), with support from The Michael J. Fox Foundation for Parkinson's Research (MJFF) and Arcadia University, uncovers the immense, often unrecognized challenges faced by family caregivers who support the nearly one million Americans living with Parkinson's disease (PwP). The new research highlights the intensive nature of their caregiving role and the unique obstacles and heightened responsibilities that define the Parkinson's disease (PD) caregiver experience.
The Parkinson's Disease Caregiving in the U.S. report with insights from secondary analysis and supplementary interviews reveals the immense physical, emotional and financial challenges faced by PD caregivers, who dedicate on average 31 hours of unpaid care per week to caregiving tasks—with half of interviewed caregivers exceeding 100 hours each week.
Other key findings from secondary analysis include:
- Prolonged caregiving journey: More than 60% of caregivers have been providing PD care for more than a year, while 35% have done so for five years or longer.
- Complex care needs: Nearly half (47%) of PwP require memory-related support, adding to the complexity of care. These caregivers also assist with an average of three activities of daily living (ADLs), such as bathing and dressing, compared to nearly two for non-PD caregivers.
- Employment challenges: Fifty percent of PD caregivers juggle employment while caregiving, working an average of 37 hours per week.
- Resource gaps: More than one-third (35%) of caregivers say they need more resources to keep PwP safe at home, while 43% cite the need for tools to manage their own stress and health.
"This new research coupled with powerful caregiver stories, shines a light on the important role that family caregivers play in supporting people living with Parkinson's disease," said Jason Resendez, President and CEO of the NAC. "Parkinson's caregivers are navigating one of the most complex care journeys imaginable, often at a great personal cost, yet they do so without the support they need and the recognition they deserve."
The report offers five actionable recommendations to address these challenges including policy reforms, enhanced caregiver training, and financial support for PD caregivers.
"This first-of-its-kind report illuminates the extraordinary commitment of our nation's Parkinson's caregivers who provide critical physical and cognitive care every day," said Dustin Watson, Vice President, Head of Federal Government Relations at MJFF. "We are proud to partner with NAC to underscore the urgent need for greater support, resources and recognition of the indispensable partnership that caregivers provide for people living with Parkinson's. This research also builds a strong case for increased study of the caregiver role, as well as meaningful policy changes—like caregiver tax credits and better access to home and community-based services for patients—which we encourage our nation's elected officials to prioritize."
Contributing author Dr. Margaret L. Longacre, Professor of Public Health and Dean of the College of Health Sciences at Arcadia University, emphasized, "This report shines a critical spotlight on the experiences of caregivers, offering an evidence-based roadmap to better equip, acknowledge, and empower them as essential partners in Parkinson's care."
For more information and to access the full report, visit www.caregiving.org.
About the National Alliance for Caregiving
Since 1996, the National Alliance for Caregiving (NAC) has been a catalyst for change, transforming how the United States recognizes, supports, and values our 53 million family caregivers providing complex care. Through our nationally recognized research and our advocacy for the first-ever National Strategy to Support Family Caregivers, we drive the policy, system, and culture change needed to make family caregivers a national priority. With more than 50 members, we build partnerships across aging, disability, healthcare, philanthropy, and the private sector to make caregiving more sustainable, equitable, and dignified. Learn more at https://www.caregiving.org
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