The chief scientific officer at the Parkinson's Foundation spoke about the need to increase awareness about the proper care of patients with Parkinson disease.
James Beck, PhD
Parkinson disease comes along with a number of complications, from challenges in treating patients to managing the symptoms they experience. Although, one of the biggest challenges is for physicians to have an awareness about the unique treatment these patients require.
James Beck, PhD, chief scientific officer of the Parkinson's Foundation, and his colleagues are working toward addressing this limited awareness among physicians who may not encounter these patients every day. The prevalence of Parkinson is expected to rise to 1 million by 2020, more than the number of people diagnosed with multiple sclerosis, muscular dystrophy, and amyotrophic lateral sclerosis, combined. Ultimately, almost 60,000 patients are newly diagnosed each year, according to the foundation.1
To find out more about the state of care for Parkinson and what can be done to address some of the challenges for these patients, Beck spoke with NeurologyLive®
NeurologyLive®: How would you describe the current state of Parkinson care?
James Beck, PhD:
I would say it’s bifurcated. The care people with Parkinson receive at our centers of excellence through movement disorder neurologists, those who treat people with Parkinson disease on a regular basis—I think provide good care. The doctors are attuned to the complexities of Parkinson disease, clinicians are aware of what’s going on and can deal with the complicated medical regimens many people with Parkinson have. As their Parkinson disease progresses, it gets complicated.
However, I think there’s a large pool of individuals—there’s nearly a million people with Parkinson disease in the United States, and so not all these people can go see expert neurologists to take care of their Parkinson disease. That’s where I think the other half of the situation lies. And that is, people with Parkinson disease who are seeing those individuals who are invested in their patients, but just don’t have the experience and knowledge that’s necessary in order to really take care of a person with Parkinson disease as their disease progresses.
Is awareness a challenge in the physician community?
I think it is. I think the classic case is when a person with Parkinson disease gets admitted to a hospital. Here is a time point that is a really critical for that person living with the disease. Too often the clinical staff at a hospital—be it the ER physician or the hospitalists who are there as well as the allied physicians who are the professionals supporting the clinicians—they don’t appreciate the issues that a person with Parkinson deals with.
For example, delivering medications on time. Too often a person with Parkinson disease comes into the hospital for maybe for an elective procedure or some traumatic incident like a fall or what not, the staff doesn’t appreciate that the medications need to be delivered in a very tight window—on the order of 30 minutes. It’s not the typical 2-hour time frame. And as a result, there can be confusion from the staff on how to best handle these individuals, and the person with Parkinson doesn’t have a good experience as a result. Their Parkinson symptoms can be undertreated, and they can have other complications as well. Physicians see what can happen with an overburdened hospital. They can have some fluctuations in cognition, they could be experiencing hallucinations and sometimes what can happen is they can get prescribed typical antipsychotic medications, which are often contraindicated to their disease. Many times, antipsychotics are dopamine depleters and that’s what you don’t want to give to someone who already has low levels of dopamine due to their disease.
Awareness about Parkinson disease, awareness about the needs for a person with Parkinson, is something that could go a long way to improving the care for people living with the disease.
How can increasing awareness help, and what’s being done to do so?
April is Parkinson awareness month, so this a key month that our Foundation, as well as many other like-minded organizations, are trying to raise overall awareness within the community about Parkinson disease. Within the clinical community, we have efforts in which to train a host of professionals. We have special courses dedicated to nurses and different therapists—speech, physical, and occupational therapists.
We also offer trainings and personnel trainings; it’s called our Allied Team Training program, and this is an opportunity for clinicians who might care for people with Parkinson disease or members of their team to come together in something like a boot camp, if you will. Really, learn the ins and outs of care for a person with Parkinson disease as a team. So, those are some of the ways in which we try to reach out to the community. We’re also working on new ways to do that as well.
Part of a nationwide campaign we plan to roll out this fall is the Newly Diagnosed Initiative. This is an important effort at a critical juncture in the time period of a person with Parkinson disease. At the time of diagnosis, it can really set in motion how this person looks at their disease and how they’re treated. For instance, providing them with the necessary educational material so they can better manage their disease. Part of that would also be educating healthcare professionals about Parkinson disease along with the resources that are avaible to their patient community so that they can better self-manage their disease in between visits.
1. Statistics. Parkinson’s Foundation website. Published 2016. parkinson.org/Understanding-Parkinsons/Statistics. Accessed April 8, 2019.