While Parkinson’s disease is characterized by movement symptoms, it also causes a range of nonmotor complications, including pain, cognitive changes and psychosocial issues. In 2020, Cleveland Clinic began offering a Parkinson’s disease palliative care clinic, named the Care-PD Clinic, to help patients and their caregivers address the most distressing symptoms of the disease and maximize quality of life.
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“As most patients get toward the intermediate and advanced stages of Parkinson’s disease, it’s the symptoms unrelated to movement that tend to have the biggest effect on quality of life,” says movement disorders neurologist Adam Margolius, MD, who sees patients in the Care-PD Clinic along with a palliative care specialist and a social worker. “Typically these are symptoms like confusion, cognitive impairment, constipation, fatigue, anxiety, depression, sleep problems and others.”
In the most recent episode of Cleveland Clinic’s Neuro Pathways podcast, Dr. Margolius shares insight on providing palliative care for people with Parkinson’s disease when quality-of-life issues loom especially large. He covers:
Click the podcast player above to listen to the 18-minute episode now, or read on for a short edited excerpt. Check out more Neuro Pathways episodes at clevelandclinic.org/neuropodcast or wherever you get your podcasts. This activity has been approved for AMA PRA Category 1 Credit™ and ANCC contact hours. After listening to the podcast, you can claim your credit here.
Podcast host Glen Stevens, DO, PhD: What are the signs that a person with Parkinson’s disease might particularly benefit from referral to a palliative care clinic?
Dr. Margolius: Although a palliative care clinic is a bit of a limited resource, we don’t want to constrict providers at all from referring if they think the clinic would be helpful for a given patient and their caregiver. More specifically, however, there are three situations when I think patients with Parkinson’s stand to gain the most benefit from a clinic like this.
One is when patients are overly troubled by nonmotor symptoms of Parkinson’s disease and traditional therapies are not working as well as we’d like, especially if pain is a consideration. That is something that our Care-PD Clinic can address to a deeper extent than can typically be done during a movement disorder visit.
A second instance is if there is significant caregiver burden or strain. Often the caregiver role can grow and grow, and that can lead to decreased quality of life for the caregiver, which often directly affects the patient too. If there’s a lot of caregiver strain present, that’s something we can help with.
The third situation is if there are questions about the future ― planning for the future or about death or dying. Those are issues that we can help out with as well.