The vision of the Parkinson’s Foundation is for all people to have access to equitable and quality Parkinson’s disease (PD) care. When people with Parkinson’s receive quality Parkinson’s care, they can better manage their PD symptoms —and maximize quality of life. We provide best-practice care training, the latest information and access to educational tools for doctors, nurses and every member of the health care team.
Access to Parkinson’s Care is Limited
One million Americans live with PD. This number is expected to increase to 1.2 million by 2030. The reality is that not every American with Parkinson’s has access to a PD specialist.
- Less than 17,000 neurologists practice in the in the U.S. (only 5,000 general neurologists). The number is projected to increase to 18,000 by 2025.
- 660 movement disorders specialists practice in the U.S. and fewer than 10 practice in rural counties.
Increasing Access to Quality Care
We believe in making quality care accessible for all people with Parkinson’s. We do this through our care strategy:
1. Easier Parkinson’s Diagnosis
2. Utilization of Care
We help healthcare professionals apply patient-centered PD quality care through our Global Care Network, which designates centers that offer specialized PD care. We also continually develop new resources designed to help healthcare professionals deliver evidence-based PD care — such as our robust online Learning Lab with courses tailored for all disciplines.
3. Access to Care
We reduce barriers to care for populations of focus. We do this through training the PD healthcare professionals who have the greatest reach and impact, and work with community partners to understand the needs and help reach these populations.
4. Access to Support
We fund essential local programs and events through our community grants. We aim to reach all 50 states and host more Foundation-led education programs. Call our Helpline at 1-800-4PD-INFO (1-800-473-4636) to help your patients find their nearest wellness and education program.
5. Access to Information
We connect people with PD and care partners to helpful educational materials based on their needs. We do this through ensuring PD information is available, useful and accessible to people with PD and their care community.
Quality Care Initiatives
We believe in patient-centered quality care. Healthcare professionals are key to providing better care for people with Parkinson’s. Personalized treatment plans, complementary therapies, increased focus on mental health and understanding care partner strain to improve daily care should all be integral when it comes to Parkinson’s care.
Explore our quality care initiatives that put the person with Parkinson’s first:
Hospital Care Initiative
Each year more than 300,000 people with Parkinson’s disease receive hospital care in the U.S. Whether unexpected or planned, a hospital visit puts a person with PD at significant risk of avoidable complications that can lead to longer hospital stays, more severe PD symptoms, and increased costs. We estimate that every year, 1 in 6 people with Parkinson’s will experience avoidable complications in the hospital, often related to issues with medication management, mobility and dysphagia.
How We Are Addressing It
The Parkinson’s Foundation is committed to leading the national effort to improve hospital care through systemic changes in areas of policy, technology, culture and education. Our Hospital Care Initiative aims to eliminate preventable harm and promote higher reliability in care for people with Parkinson’s in the hospital. Through this initiative, we have developed key tools and resources for patients and providers.
Parkinson’s Foundation Hospital Care Recommendations
Building on our Making Hospitals Safer for People with Parkinson’s report, Parkinson’s Foundation Hospital Care Recommendations outline five standards of care to improve hospital safety and provide tools to facilitate their implementation. The Recommendations were created in partnership with Hackensack Meridian Health, Henry Ford Health, and the University of Florida Health Norman Fixel Institute for Neurological Diseases, with support from Dr. Peter Pronovost and Manatt Health.
Palliative Care Initiative
Treatments and medications prescribed for people with Parkinson’s primarily address movement symptoms. In Parkinson’s, non-movement symptoms — such as depression, anxiety and fatigue — go underreported and undertreated. People with Parkinson’s often find these symptoms to be more debilitating than movement symptoms, according to our clinical study, the Parkinson’s Outcomes Project.
“Palliative care is about professionals of all disciplines really being active listeners and listening to the agenda of a patient and family who's sitting in front of you, not the agenda of what you think that they should need. Listen to where they are in their Parkinson's journey.”
- Joan Gardner, BSN Nurse
How We Are Addressing It
Palliative care, also known as supportive care, is an approach to care that focuses on treating the whole person instead of the disease. When healthcare professionals provide PD-tailored palliative care, the focus is on quality of life. Studies have shown that people who receive palliative care experience:
- Less pain and other symptoms like constipation.
- Improved quality of communication with doctors and family members
- More emotional support.
- Care that is more aligned with their wishes and meets their emotional and spiritual needs.
Our goal is to make the palliative care approach widely available and accessible from the time of diagnosis, providing support for people with Parkinson’s and their family members, throughout every stage of the disease.
Our initiative, Implementing Team-based Outpatient Palliative Care in Parkinson’s Foundation Centers of Excellence, provides personalized training to PD specialists and teams in the art of palliative care. Parkinson’s Foundation designated centers receive individualized training and implementation plans that best meet the needs and resources of their center. Working in collaboration with the University of Rochester Medical Center, the program was launched based on a Patient-Centered Outcomes Research Institute (PCORI) funded study. Through this initiative, the Foundation has trained more than 800 health care professional team members across Centers of Excellence, which provide care for more than 70,000 people with PD.
A Parkinson’s Palliative Care Model
Professional Education Opportunities
The Parkinson’s Foundation focuses on best-practice care training, providing the latest information and increasing access to educational tools for doctors, nurses and every member of the health care team.