Facing Parkinson’s Together: Understanding the Costs and Supporting Care Partners
A new report, The Economic Burden of Parkinson’s Disease and Atypical Parkinsonisms in the United States, released in March 2026, by The Michael J. Fox Foundation (MJFF) shows that the annual economic impact of Parkinson’s disease and atypical parkinsonisms in the United States reached $82.2 billion in 2024 – surpassing earlier projections by more than a decade. It’s estimated that over 1.2 million people live with Parkinson’s and related conditions in the United States – and that number is expected to double by 2040 due to our aging population.
The costs related to Parkinson’s disease are not limited to hospital visits or medications, in fact, the majority – $58.4 billion – comes from indirect and non-medical expenses including lost income, disability and the often-unseen labor of caregiving. Behind these numbers are people and families navigating life with Parkinson’s – and the care partners who support them.
Nearly 40 percent of people living with Parkinson’s rely on unpaid care partners, often spouses, family members or close friends. Care partners often adjust their own lives in profound ways: reducing work hours, retiring early or even forgoing their own health care. In 2024 alone, care partners experienced $8.3 billion in lost earnings and productivity.
“Behind these data are millions of people — patients, families and care partners — navigating the daily realities of Parkinson’s, including a growing financial strain that touches every part of their lives,” said Debi Brooks, MJFF’s chief executive officer and co-founder.
As part of its ongoing commitment to support people and families living with Parkinson’s, the Foundation recently released a new resource, Facing Parkinson’s Together: A Guide for Care Partners. The guide is designed with input from medical experts as well as the Parkinson’s community and offers practical tools and emotional support for those navigating the complexities of care partnership.
Care partnership takes many forms across the Parkinson’s journey. Whether providing physical assistance, emotional support, financial management or simply being present, care partners are a central part of the Parkinson’s journey. It also emphasizes that care partners need care, too. From strategies for communication to prioritizing self-care, the guide equips individuals with the knowledge and reassurance that they are not alone.
The comprehensive, easy-to-navigate and digital-only resource is designed to support anyone caring for or supporting a person living with Parkinson’s disease, from spouses and adult children to friends and extended family. In the guide people and families can expect to find:
· Practical guidance on supporting a loved one through the progression of Parkinson’s
· Tips for managing day-to-day caregiving responsibilities and routines
· Strategies for navigating common emotional and relationship challenges
· Information on communicating effectively with healthcare providers and care teams
· Guidance on planning for future care needs and decision-making
· Resources for prioritizing the care partner’s own well-being and avoiding burnout
· Connections to additional support services and community resources
“Care partnership is love in action, but it can also be exhausting, emotional and isolating,” said Rachel Dolhun, MD, DipABLM, principal medical advisor at The Michael J. Fox Foundation and a movement disorder specialist. “This guide was created to help care partners feel less alone and more supported, with trusted information they can return to again and again as Parkinson’s evolves.”
The report’s findings highlight the importance of increased investment in research and advocacy to deliver the breakthroughs that patients and families urgently deserve. Take action and join us.
· Join the Parkinson’s Policy Network, MJFF’s grassroots advocacy program. Learn more here.
· Participate in research and join PPMI, the Foundation’s landmark research study. Learn more here.
· Get involved with Team Fox, the Foundation’s grassroots community fundraising program. Learn more here.
The Michael J. Fox Foundation is a Champion Partner of the World Parkinson Coalition®. They have been supporting the Coalition since inception in 2004. Follow them to learn more about their work on policy and research on Instagram, Facebook and LinkedIn. For questions about advocating for Parkinson’s policies, please email policy@michaeljfox.org.
Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not reflect the opinions or positions of the World Parkinson Coalition®