Dan Keller 0:08
Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller, at the Parkinson's Foundation. We want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives. In this podcast series, we highlight the fruits of that research—the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow. Parkinson's disease is a complex condition involving a multitude of physical, cognitive, behavioral, emotional, and social aspects. The disease is best managed if people with PD have access to a team of healthcare professionals who can address these needs as they arise and coordinate care as the disease progresses. So, the Parkinson's Foundation implemented the Allied Team Training for Parkinson's, or ATTP, program for healthcare professionals from diverse disciplines. In this three- to four-day program, attendees learn the best techniques in Parkinson's disease care through a team-based approach. Nurse and program founder Ruth Hagestuen has worked in the Parkinson's area for many years and was instrumental in designing ATTP. She describes the program's goals, what it involves, and what it has accomplished. But first, how it came about.
Ruth Hagestuen 1:46
Allied Team Training for Parkinson's is a program that was designed really about in 2000–2002. We were writing a grant to start this program. It's a professional education program for teams of interdisciplinary specialties. So, the reason we decided to do this program is because people with Parkinson's were going for care and were not able to find professionals that knew Parkinson's well enough to give them state-of-the-art care. Those of us who were in specialized centers felt very concerned about that and wanted to create a program that would provide educational opportunities for professionals that wanted to learn to provide better care in Parkinson's. At the same time, the National Parkinson Foundation had this network of Centers of Excellence that provided really expert care delivered by physicians and certain professionals, but they wanted to be able to train teams of interdisciplinary care providers. So, the disciplines that we've included in this program are physicians, nurses, physical therapists, occupational therapists, speech-language pathologists, social workers, and music therapists. Some come as individuals for this multi-day intensive training, and many come as teams. The first course was offered in 2003. Since then, we have offered this course in various regions of the country that have requested it to be hosted, usually at a Center of Excellence, where they bring in people from their region and also people from around the country. To date, we have completed 29 of these, and in this multi-day process, there have been about 1,800 people that have finished the course. And I think it's 188 teams that have come through as well.
Dan Keller 4:00
Is this a program that is applied to each team? It's pretty uniform? It's formal and rigorous?
Ruth Hagestuen 4:07
It is. The core components of the program are formal and rigorous. So, there are the key components, which is Parkinson's disease—we want every person that goes to the program to understand the best we know to date about Parkinson's. Then they have a specialty area. If they are, for example, physical therapists, they have a certain number of hours just in physical therapy to learn the state-of-the-art protocols and latest research in physical therapy and, you know, modalities to help people with their movement, etc. And the same for the other disciplines—OT, speech, music, nursing, and social work. Then we have a specialist in team training, so we work with all the disciplines together so they understand the unique contribution of each discipline besides their own, so they learn how to function together and learn to do this in a way that's very sensitive to the needs of people with Parkinson's at each stage. We look at early stage, middle/more complex stage, and later stage, because the needs of people are different. And of course, we emphasize the importance of patient-centered care. It's a real challenge in Parkinson's disease to provide well-planned, integrated, patient-centered care, because each person is different and there are so many different symptoms and the complexity of what someone brings in their life—and if they're working, it's one thing; if they have young children, it's another thing; if they have other disease entities that are challenging them. And so it's a process of maximizing their potential for the highest quality of life throughout the rest of their lives, because they can live for many, many years and have good quality of life in comparison to earlier days. Even when we started this program, there were many fewer options for care. Now we know so much about the benefits of exercise, music therapy, you know, all of the other areas that deliver real quality in terms of therapeutic impact on their lives. And in addition to just creating teams within centers, we're very much connecting to the community—connecting to the community of people with Parkinson's or other specialty groups, for example, long-term care groups or hospital groups, people that then partner in care delivery that can be available in a certain region.
Dan Keller 6:56
It sounds like each team member becomes sort of well-rounded, to at least know to whom they can refer. If some physical therapist says, "Well, you might actually be a good candidate for music therapy," or "you might be a good candidate for this." So, do they act in that capacity as well?
Ruth Hagestuen 7:11
Very much so. They have a sense of referring to each other, referring to programs in the community, and often when they're working together—for example, a music therapist may work with a physical therapist, or physical therapy and occupational therapy often collaborate on different programs. Or, of course, the physician is involved, or the nurses and social workers are involved, to complement each other. Speech is a challenge for many people with Parkinson's—their voices become softer, enunciation may be a challenge—so music and speech will work together on singing. And sometimes, if someone has a bit of change in swallowing, they can work together on that.
Dan Keller 7:58
Is it worth a patient or family to ask, when they go to a center, "Have you gone through the Allied Team Training for Parkinson's? Do you participate?"—to be sure that they've got a well-rounded team?
Ruth Hagestuen 8:11
This is one of the things that happens often. Someone will go and say, "I would like to see and be part of a team so that I can plan my care throughout the course of my disease." And some will come in saying, "I want to get sort of a baseline—I want to see these different team members early on to form my team and know who they are and how I can maximize my potential now, rather than waiting till there are changes and only learning who's out there then." So, there have actually been people in communities that have recruited a team, if they didn't have a specialized team in their area—they have recruited and supported teams to come and be educated in this program. And it's really interesting to see that, and the impact of that on the people that participate in the program. People that have gone through this program are always saying, "I now really enjoy working with people with Parkinson's a lot, because I understand better what's going on with them." We can see a huge difference if someone sees a therapist, a physician, or a nurse or social worker who really understands Parkinson's, because then you start from where you are. What the person that is educated in this—or the team that's educated in this—brings is that knowledge of Parkinson's. What the person and their family bring is their situation. And together, you plan how best to go forward, to really form a treatment plan, a care plan, a life plan that fits the desires of the person with Parkinson's and their support people, like caregivers, care partners, and family members.
Dan Keller 9:58
Is there anything to add, or that we missed? That's interesting.
Ruth Hagestuen 10:03
I think the interest in this program is growing. I think the way it's designed still really meets a need. This has been offered now—modeled after this program—as Allied Team Training in Brazil. There's one coming up in Chile that's being done. We're going to have one in Canada next year, and there may be more. Attending this program—the first one was conducted in Miami. The bulk of the people that attended the Miami course were from there. And now, when you look across the attendees, we have 90 people currently registered for the program in Miami. They're from all over the country and from different countries. There's someone coming from Venezuela, there are people coming from Chile, and coming from Canada for this course. So it's really spread. And I think the strongest message is: it's still there, it's still growing, it's still being perfected, because it's still meeting a real need.
Dan Keller 11:05
Very good. Thank you. To find out how Parkinson's treatment providers around you can access the ATTP program or any other resources, you can call our toll-free helpline to speak with our PD Information Specialists. They can answer questions and provide information about this topic or anything else having to do with Parkinson's. You can reach them toll-free at 1-800-4PD-INFO. Registration is now open for ATTP Atlanta, which will take place October 17–20, 2018. To apply today, please visit parkinson.org/attp. If you have any questions about the topics discussed today, or if you want to leave feedback on this podcast or any other subject, you can do so at parkinson.org/feedback. At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series every other week. Till then, for more information and resources, visit parkinson.org or call our toll-free helpline at 1-800-4PD-INFO—that's 1-800-473-4636. Thank you for listening.
