Our Care Strategy

Since 1957, the Parkinson’s Foundation has been a national leader in improving care for people with Parkinson’s disease (PD). We drive a multi-disciplinary care strategy to advance our vision that every person with Parkinson’s receives the highest quality care possible, regardless of setting.

We Are Improving Care

Our  key care priorities are to:

1. Define quality Parkinson’s care across the care continuum.
2. Empower people with Parkinson’s to advocate for timely, quality and person-centered care that aligns with their goals.
3. Support education and training of a robust Parkinson’s care network and workforce to deliver quality care to a growing Parkinson’s community.
4. Expand the evidence base for emerging best practices, care models and tools to accelerate dissemination.

We are committed to working with health care, government, researchers, and most importantly, people with PD and their care partners, to shape a system that is grounded in the needs and priorities of those who live with Parkinson’s.

The Care Crisis

Parkinson’s is the fastest growing neurological disorder in the world. There is no cure. As Parkinson’s prevalence rises in the aging U.S. population, both financial and healthcare systems face significant challenges.

• Nearly one million Americans live with PD. That number  is projected to increase to 1.2 million by 2030 as the U.S. population ages.
• Nearly 90% of people with PD are covered by Medicare. The average age of diagnosis is 60 years old, and incidence increases with age.
• In 2019, approximately 808,107 Medicare beneficiaries had a PD diagnosis and almost 40% of those with Medicare and PD were enrolled in a Medicare Advantage plan.
• While age is the prime risk factor, PD affects people of all ages regardless of sex, race, ethnicity, socioeconomic status, or geography.

 Rising Healthcare Costs

As the number of people with PD rises, so too will the associated costs. The combined cost of Parkinson’s, including treatment, social security payments and lost income, is estimated to be nearly $52 billion per year in the U.S. alone and is projected to surpass $79 billion by 2037.

The federal government alone accounts for nearly $25 billion in annual spending on PD care, with $2 billion supported through Social Security and the remaining $23 billion in Medicare costs.

Specialist Shortage

There is a growing shortage of physicians who specialize in Parkinson’s. Today there are only 660 movement disorders specialists (neurologists with advanced PD training) practicing in the U.S. and fewer than 10 practicing in rural areas.

Research shows that the projected supply of neurologists will not meet the growing demand driven by the rapidly aging U.S. population. Estimates show that by 2025 there will be a 19% shortage in the number of needed neurologists.

The Parkinson’s Care Continuum

As people navigate Parkinson’s, they will receive care in different settings dependent on factors like current symptoms, treatment plan and availability of specialists.

Optimal PD care involves an interprofessional healthcare team including movement disorder specialists, general neurologists, nurses, nurse practitioners and therapy providers.

The Parkinson’s Care Continuum highlights the varied pathways that people with PD may take as they move between each setting. The Foundation’s care priorities and programs target key partners to address challenges and drive changes across this care continuum.

Quality Parkinson’s Care

Parkinson’s care will look different across the care continuum as a person navigates PD and its stages.

The Foundation has identified five principles of quality Parkinson’s care that will enhance quality of life, mitigate risk of preventable harm, and reduce costs across the care continuum.

These principles are designed as a:

• Baseline for people with PD and their loved ones to assess the care they are receiving
• Guide for health professionals who are providing PD care
• Benchmark for institutions invested in quality improvement.

Principles of Quality Parkinson’s Care

1. Early diagnosis and treatment
   Timely diagnosis and treatment of Parkinson’s symptoms.
2. Symptom management
   Early referrals to supplemental therapies like physical therapy, occupational therapy, speech language pathology and behavioral health services.
3. Medication management
   Timely medication administration, proper dosing and avoidance of contraindicated medications to optimize health outcomes and prevent symptom deterioration.
4. Team-based care
   Robust care coordination across a bolstered workforce to improve and expand access to patient-centered care.
5. Person- and family-centered care
   Individualized care focused on patient goals and unique disease progression, quality of life and care partner engagement.