From clinics to communities: A new approach to Parkinson’s care brings support closer to home

For people with Parkinson’s disease (PD), managing day-to-day symptoms often means navigating a complex health care landscape, with multiple specialists and healthcare professionals addressing different aspects of the disease. 

An international study, published in Movement Disorders, showcases a new program that could transform how care is delivered to PD patients. Co-designed at The Ottawa Hospital (TOH) and now tested in six countries, the iCARE‑PD program offers a community‑based, patient‑centred approach that brings coordinated, personalized support closer to home. 

Led by specially PD-trained nurses, 202 patients with varying stages of PD followed the four‑month program focused on individualized care plans, streamlined system navigation and self‑management support, helping people access the right care when and where they need it. 

By the end of the study, 93 per cent of participants felt like their care priorities were addressed and that there was better coordination between providers. Although overall quality of life didn’t change notably over the course of the study, participants with more advanced PD also saw improvements in movement symptoms, like stiffness and balance. 

“Life with Parkinson’s disease can be challenging and often involves managing many different aspects of care,” says lead author Dr. Tiago Mestre, neurologist and senior scientist at TOH and associate professor at the University of Ottawa. “This program helps bring those pieces together by working with a patient’s local resources, making coordinated, high‑quality care easier to navigate and closer to home.”

Before starting the iCARE-PD Program, one Ottawa participant shared that adapting to the new realities of Parkinson’s came with many questions. “My biggest challenge was feeling alone with the responsibility of managing this disease. I didn’t always know what to ask,” she reflected. But having regular conversations with her nurse “felt like someone understood what I needed and how to help me get there. It made everything less overwhelming.”

The team hopes to develop a toolkit that supports a wider adoption of the iCARE‑PD program globally. The next phase focuses on supporting advanced Parkinson’s cases, implementing across other health care systems and exploring how the approach can benefit people living with other chronic movement disorders. 

For this and other Ottawa patients who took part in the study, the idea of the program reaching others brings a sense of relief: “If this kind of support can help others the way it helped me, that would be incredible,” the patient said. “It didn’t fix everything, but it made me feel less alone.”