Untangling the connections between inflammation, aging and Parkinson’s disease
Inflammation is a process that occurs in the body as a response to a threat (e.g., an injury or a wound). However, the body’s ability to wind down the response after the threat has passed decreases as the body ages. This results in a consistent low-level, age-related inflammation known as “inflammaging” that is thought to weaken cells and tissues, including the brain. As aging is the greatest risk factor for Parkinson’s disease (PD), many have hypothesized that inflammaging plays a role in the development and progression of the disease. The details and mechanisms behind such a connection have remained a mystery, but Sarah Talley, PhD, recipient of a Parkinson’s Foundation Postdoctoral Fellowship for Basic Scientists, is hoping to shed some light on the subject.
Dr. Talley, working in the lab of Dr. Edward Campbell at the Loyola University Medical Center in Chicago, IL, seeks to understand how inflammaging may exacerbate the spread of alpha-synuclein clumps in the brain. These tangled-up alpha-synuclein proteins have been directly associated with PD, causing progressive neurodegeneration as they spread from cell to cell. It has also been shown that mice experience inflammaging like humans, making them the model of choice for Dr. Talley’s research.
What is inflammaging? Inflammaging refers to consistent inflammation that
increases as a person ages. It can weaken cells and tissues, including the brain, and may play a role in PD progression.
The key to these experiments is a genetically modified mouse line, previously generated by Dr. Talley and her fellow researchers, in which key cell types in the brain light up when experiencing inflammation. This light – bioluminescence, more specifically – can be measured and quantified under a high-powered microscope, allowing Dr. Talley to quantify inflammation in different brain cell types over time. With sophisticated cranial window imaging techniques, she will be able to make these measurements while the mice are still alive, providing valuable data over time.
Dr. Talley will inject alpha-synuclein tangles into the brains of these mice and monitor how those tangles spread and cause damage in the brain over time, but also how that spread affects brain-wide inflammation. By conducting these experiments in both young (6-week-old) and old (18-month-old) mice, Dr. Talley will be able to compare inflammation changes and alpha-synuclein spread between the age groups.
Dr. Talley, excited for the chance to start this research with the support of the Parkinson’s Foundation, spoke to the significance of this project: “We finally have the tools in place to measure when and where inflammation occurs in the [brain] during Parkinson's disease development in mouse models of the disease… These experiments will provide foundational knowledge that can inform on when and where anti-inflammatory therapeutics could be used to remedy disease in PD patients."
Highlighting the Connections between Parkinson's, Immune Responses and the Gut
It is becoming clear that gut and brain health are intrinsically connected. This connection is referred to as the “gut-brain axis.” Parkinson’s disease (PD) is no exception. Several studies highlight how gastrointestinal issues, such as constipation, commonly show up before movement symptoms when it comes to PD — often by years or decades. While the pathways linking gut health specifically to PD progression are still unknown, Juliet Taylor, PhD, and recipient of a Parkinson’s Foundation Impact Award, believes that an important element involved is type-I interferon (IFN) signaling, a part of the body’s immune response toolkit.
From her lab at the University of Melbourne in Parkville, Australia, Dr. Taylor seeks to understand how early IFN disturbances in the gut may lead to later PD development, and whether affecting such signaling can slow or prevent overall disease progression.
Meet IFN. Even those well-versed in Parkinson’s may not be familiar with type-I interferon (IFN) receptors. IFN’s help the body fight infection. Parkinson’s Foundation researcher, Juliet Taylor, is investigating whether IFN issues in the gut may lead to later PD development, and whether affecting signaling can slow or prevent overall disease progression.
IFN proteins are secreted by white blood cells, often in response to infections to stimulate immune responses. The ability of IFNs to quickly drive the body to fight back against invaders has its risks, however, since prolonged or improper IFN signaling can cause major stress and damage to cells and organs. IFN regulation has been shown to be critical in the gut, where the intestinal walls constantly encounter and prevent infection by microbes.
Dr. Taylor and her team have recently discovered that lab-created gut organoids — three-dimensional collections of gut cells that can be used to mimic live tissue — injected with PD-associated alpha-synuclein clusters (the protein associated with PD) show increased IFN production. To better understand this immune reaction to alpha-synuclein in the gut, Dr. Taylor will create variations of gut organoids with and without IFN signaling receptors and see how they react to alpha-synuclein exposure, helping to determine which gut cell types are most important in the response.
Next, Dr. Taylor will examine how alpha-synuclein injected into the gastric (gut) walls of young and old mice affects overall gastrointestinal health as well as how it may spread to the brain to cause PD-like neurodegeneration and movement symptoms. She will also use genetically engineered mice that lack the IFN-receptors to further explore how that pathway is associated with PD progression along the gut-brain axis.
Speaking on how the Parkinson’s Foundation award will support her lab’s research goals, Dr. Taylor said, “While the majority of research has focused on the brain pathology and associated motor symptoms in PD, there is increasing interest in the non-central nervous system effects of the disease, specifically the gut dysfunction experienced in many patients’ years earlier… The studies supported by this funding will develop a model within our laboratory that will potentially identify a novel modulator of the gut-brain axis in PD and therefore pave the way for future studies.”
Episode 155: The Evolution of the Parkinson’s Foundation Hospital Care Initiative
Of the one million people living with Parkinson’s disease (PD) in the United States, nearly one-third of them will have a hospital encounter each year. When hospitalized, three out of four people with PD will not receive their medications on time, possibly leading to worsening symptoms, medical emergencies, and a significantly increased length of stay, greatly increasing costs to the medical system overall.
To address this problem, the Parkinson’s Foundation developed key tools and resources for patients and providers as part of our Hospital Care Recommendations. Today’s guest, Peter Pronovost, MD, PhD, a major force in advancing hospital safety, helped develop these recommendations for making hospitals safer for people with PD, which includes standards of care. Dr. Pronovost practices critical care medicine and is Chief Quality Officer and Chief Clinical Transformation Officer at University Hospitals in Cleveland, Ohio.
Released: July 25, 2023
Peter Pronovost, MD, PhD, is a world-renowned patient safety champion, physician executive, critical care physician, prolific researcher with more than 1000 peer-reviewed publications, an innovator who has founded several technology companies, and a thought leader informing U.S. and global health policy.
Dr. Pronovost’s transformative work leveraging checklists to reduce central line-associated bloodstream infections has saved thousands of lives and earned him national acclaim. This life-saving intervention has been implemented across the U.S., and as a result, central line-associated infections that used to kill as many people as breast or prostate cancer have been reduced by 80 percent. In recognition of this innovation, his highest-profile accolades include being named one of the 100 most influential people in the world by Time Magazine and receiving a coveted MacArthur Foundation “genius grant.”
While serving as Chief Clinical Transformation Officer at University Hospitals Health System in Cleveland and as a Professor in the Schools of Medicine, Nursing and Management at Case Western Reserve University, Dr. Pronovost developed a checklist to make visible defects in value and deployed a management and accountability system to eliminate those defects.
This system reduced the annual cost of care for Medicare patients by 30% over three years while improving quality. In 2022, Dr. Pronovost lead the efforts that culminated in University Hospitals winning the American Hospital Association’s Quest for Quality award, the industry’s most prestigious honor recognizing its member organizations for their commitment to quality. He was named the Veale Distinguished Chair in Leadership and Clinical Transformation in 2023.
Studying the Intersection of Movement and Cognitive Disorders to Better Understand Parkinson’s Disease
Chi-Ying Lin, MD, MPH, is researching how movement and non-movement symptoms intersect for people with Parkinson’s disease (PD) and Alzheimer’s disease. Through studying these symptoms in people with movement disorders and cognitive disorders, he hopes to learn more about what parts of the brain produce specific symptoms, which could lead to new treatments for people with Parkinson’s.
Following his Parkinson’s Foundation fellowship at Columbia University Irving Medical Center, Dr. Lin is now an assistant professor of neurology at Baylor College of Medicine with dual appointments in the Alzheimer’s Disease and Memory Disorders Center and the Parkinson’s Disease Center and Movement Disorders Clinic, which is a Parkinson’s Foundation Center of Excellence. We spoke to Dr. Lin to learn more about his work and what he finds most promising in current Parkinson’s research.
What led you to Parkinson’s research?
I was very interested in the personalization of Parkinson’s evaluation and treatment plans, and in learning more about how movement and cognitive symptoms intersect.
I came to the United States after my residency in Taiwan because I was interested in neuropathology at Columbia University. When I arrived, I had a chance to hear Dr. Stanley Fahn speak about movement disorders and it blew me away. I decided I wanted additional training in movement disorders. Because of the excellent clinical training and mentorship opportunities in the U.S., I decided to restart my career here, which led me to my residency at Mount Sinai and my fellowship at Columbia University Irving Medical Center, which was supported by the Parkinson’s Foundation.
Why research the intersection of movement disorders and cognitive disorders?
In my first exposure to cognitive disorders in Taiwan, I was not entirely aware that people with movement disorders actually have a lot of cognitive issues. At Columbia University, I learned through the Parkinson’s Foundation that around 50% of people with PD could have either mild cognitive impairment or dementia. I felt it was important to study this intersection, which is a relatively new field.
There is a brain region called the cerebellum that sits right behind the brainstem and above the neck. It used to be thought of as a pure motor organ and was often studied to understand movement. However, in the past 10 years, there has been an increased understanding that the cerebellum controls non-movement symptoms as well.
Getting To Know the Brain
The cerebellum, which means “little brain,” is primarily responsible for coordination of movement, maintaining posture and balance, muscle tone and motor learning. Recent research also started to reveal the role of cerebellum in non-movement symptoms.
The basal ganglia is an interconnected group of brain structures that control movement, thinking and emotions.
Can you tell us about your impulse control study?
In my fellowship, I conducted studies, and one primarily focused on the intersection of movement and cognitive disorders, especially for impulsivity and compulsivity, which are commonly seen in people with Parkinson’s. This study compared impulsivity in people with Parkinson’s to people with a different cognitive condition, Cerebellar Ataxia, which can include impulsive behavioral symptoms as well.
Our findings determined that impulsivity was different between the two conditions, and with Parkinson’s disease, it can be more widespread to include several impulsive behaviors that are both movement and non-movement related, including gambling, eating, hypersexuality, spending and compulsively taking medication. This suggests that that cerebellum and basal ganglia, a different part of the brain that is affected by PD, can produce different kinds of impulsive behaviors, furthering our understanding of how the cerebellum functions.
What are you currently researching?
The goal of my current study is to better understand the genetic and environmental factors that lead to Alzheimer’s or Parkinson’s in each participant.
I am on dual appointment in the Parkinson’s Center and Alzheimer’s Center. I’m also part of Baylor’s Precision Medicine Core, where I comprehensively study people with and without cognitive disorders and use clinical history, comprehensive assessments, neuroimaging and genome sequencing to characterize early cognitive impairments and determine the risk a person has for a cognitive disorder. Houston, TX, where Baylor is located, is the most racially and ethnically diverse city in the country, which makes it a great place for this study.
Furthering the work I did during my fellowship; I’m also conducting a functional neuroimaging project to identify the role of the cerebellum in both Alzheimer’s and Parkinson’s. Once we understand the role, we can consider treatments like deep brain stimulation to address impulsivity and compulsivity.
What gives you hope for the future of Parkinson’s research?
My overarching goal is to be part of the experts in the world that find the modifying therapy or, to be ambitious, the corrective therapy for Parkinson’s. Practically, I want to address the symptoms of Parkinson’s, which is why I’m focusing on the cerebellum and its impulsivity power to see if we can better address that symptom for people with Parkinson’s.
What do you see as the most promising recent discoveries in Parkinson’s research?
The Parkinson’s Foundation genetics study, PD GENEration, Mapping the Future of Parkinson’s Disease, is something that my patients and their families benefit from immensely because it not only includes genetic testing, but genetic counseling as well at no cost to participants. I’ve enrolled many patients into the study, and I think overall it will be a very fruitful study for Parkinson’s research.
I also believe the Parkinson’s Foundation study about alpha synuclein detection in stool is very interesting and could lead to earlier Parkinson’s disease detection. It interests me because it is noninvasive and could allow for early-stage study recruitment.
How has support from the Parkinson’s Foundation impacted your career?
My fellowship taught me that Parkinson’s does not look the same in every person, and care must be individualized. I’m so appreciative of the support I’ve received from the Parkinson’s Foundation.
There are not enough movement disorders specialists, especially in rural areas, and the Foundation’s support of expanding care for people with Parkinson’s is so important.
Because of the Parkinson’s Foundation, I was able to learn from well-respected movement disorders leaders and build upon my foundation as a movement disorders neurologist. I was lucky to be in the last fellowship class trained by Dr. Fahn before his retirement. He taught me how to be a very compassionate movement disorders neurologist who actively works with patients and their families to find the best treatment options.
A healthy immune system recognizes and fights off illness and disease. Inflammation is part of that process. However, if inflammation persists over long periods of time — which might be the case in Parkinson’s disease (PD) — it can begin to do more harm than good. New research suggests that inflammation may play a critical role when it comes to Parkinson’s.
Studies have shown that inflammation is linked to certain Parkinson’s symptoms and that people with Parkinson’s have markers of inflammation (certain proteins or chemicals that are associated with the inflammatory process) in their blood and cerebrospinal fluid. Moreover, research indicates that manipulating inflammation in an animal model of Parkinson’s resulted in damaging changes in the brain.
Many questions remain about the exact role and mechanisms of inflammation in Parkinson’s. Most importantly, scientists want to untangle whether inflammation plays a role in the onset of Parkinson’s, or whether it is a result of the disease. Another significant question is whether inflammation is associated with certain clinical features that could predict disease progression.
A new study published in Movement Disorders by Talene Yacoubian, MD, PhD, a neurologist at University of Alabama at Birmingham and a Parkinson’s Foundation Scientific Advisory Board member, and colleagues addresses some of these questions. Dr. Yacoubian and her team designed a clinical study to assess the presence of inflammation in those who were within two years of a Parkinson’s diagnosis — before starting medication that may lead to changes in inflammation.
The goal of the study was to determine whether inflammation is present early in Parkinson’s, and whether certain markers of inflammation were correlated to clinical features. The authors plan to follow the study participants to see how inflammation changes in individuals over time.
A total of 120 participants were enrolled in the study. Of those, 58 had Parkinson’s and 62 were healthy controls (did not have PD). Researchers collected blood from all participants to look for various markers of inflammation. A subset of participants also had cerebrospinal fluid samples collected and/or had regions of their brains imaged using a technique that is used for to analyze neuroinflammation.
Study Results
Individuals with Parkinson’s showed significantly higher levels of brain inflammation than people without PD in several brain regions. This measure of brain inflammation was also correlated with other markers of inflammation in the blood and cerebrospinal fluid.
Researchers looked at whether the brain imaging results were correlated with any clinical measure in participants with Parkinson’s. They found that inflammation in several brain regions was associated with worse visuospatial and cognitive scores.
What do these findings mean to the people with PD right now?
Currently, brain inflammation markers cannot be used to diagnose Parkinson’s or predict disease progression. Additionally, we do not yet know whether Parkinson’s medications have any impact on inflammation, nor do we yet know how inflammation changes over the course of the disease.
How are these findings important for the development of future treatments?
Measures of inflammation may help predict cognitive decline. However, we need long-term studies designed to measure inflammatory signals and associated cognitive outcomes to better understand the relationship between these two processes.
Long-term follow-up of study participants will be critical in understanding the significance of early inflammatory signals in Parkinson’s.
There are already multiple studies underway that further delve into inflammation and neurodegeneration. This research can ultimately lead to doctors being able to track inflammation to assess disease progression, and to the development of therapeutics that target inflammatory pathways in Parkinson’s.
Learn More
The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about PD and the topics in this article through our below resources, or by calling our free Helpline at 1-800-4PD-INFO (1-800-473-4636) for answers to your Parkinson’s questions.
In 2016, Karl Heilbron, PhD, joined 23andMe as a postdoctoral researcher studying Parkinson's disease (PD). He knew his work with genetic data could be important to improving the lives of people with PD in the future but wanted to do something to support them now.
“I’m a geneticist by training and basically my job was to try and make some new research discoveries regarding Parkinson’s disease using a large amount of genetic data that 23andMe had collected,” Karl said. “My boss at that time also happened to be living with Parkinson’s. I was inspired by seeing his daily struggles with the disease to do something more to help. I knew that working with these data could hopefully lead to discoveries that could improve the lives of people with Parkinson’s, or even lead to a cure, but that could take time because research is a long road. I wanted to get more involved and actually meet other people with Parkinson’s and find a way to help them today.”
Karl learned about the Parkinson’s Foundation from his boss and decided to start a company team for Moving Day. Now, years later, employees at 23andMe look forward to Moving Day San Francisco every year. However, it's not just the walk they are excited about — it's the company-wide talent show they put on to raise money that keeps people talking.
From musical acts and art displays to “synchronized scientists” portraying genetic code in an elaborate on-land synchronized swimming spectacle, the 23andMe talent show allows employees to share their skills and get to know their coworkers in a new way.
"People tell us every year that this is the company event they look forward to most," said Karl. "For one day, you get to see all of the talents your coworkers have, have a ton of fun and feel great about raising money for an excellent cause."
The 23andMe team has grown each year. In addition to the talent show, they hold a bake sale and silent auction. In 2022, the 23andMe team raised $25,831 and the company's Co-founder and CEO, Anne Wojcicki matched that amount for a total of $51,644.
“It’s a real day of unity and a whirlwind of excitement for the whole company,” Karl said. “Everyone loves the entertainment and sharing their talents, and they also leave the day feeling very good about what they raised money for.”
Karl feels his involvement with the Parkinson’s Foundation, and in getting his coworkers involved, has allowed him to fulfill his desire to help people living with Parkinson’s today. He is excited about the research the Foundation funds but appreciates all of the resources it has developed to assist people living with Parkinson’s, especially community programs.
“I served as a community grant reviewer last year and I got to take a peek behind the scenes of the kinds of programs that receive funding from the Parkinson’s Foundation,” he said. “I could really see the attention the Foundation gives to trying to ensure everyone with Parkinson’s has access to resources, regardless of where they live.”
Karl is proud of all of the funds his Moving Day team has raised for the Foundation and hopes other companies will get creative to raise money and awareness like 23andMe has. He has even developed a “playbook” to help other companies/individuals start their own fundraising team. If you are interested in learning more, feel free to reach out to him.
"Our team has been the number two team in the country for the past few years," Karl said. "That’s something we are really proud of, and we're proud to support everything the Foundation is doing to help people with Parkinson's."
Neuro Talk: 3 Promising Developments in Parkinson’s Research
Every year, the Parkinson’s Foundation funds the most exciting and promising research ideas in the Parkinson’s disease (PD) field. In our latest Neuro Talk, Chief Scientific Officer James Beck, PhD, is joined by three researchers whose studies were funded by the Parkinson’s Foundation. Their projects, which range from investigating environmental factors to understanding cognition, explain how research is helping us further our understanding of Parkinson’s.
Environmental factors that are linked to increased PD risk include pesticides, such as rotenone and paraquat, and the industrial solvent trichloroethylene (TCE). These chemicals disrupt the functioning of the mitochondria, the “powerhouse” of the cell. In addition, Dr. De Miranda has found that rotenone, paraquat and TCE cause activation of the protein affected by one of the most commonly inherited PD genetic mutations, LRRK2.
Dr. Sampson received a Stanley Fahn Junior Faculty Award to understand how Parkinson’s-linked pesticides affect the gut microbiome, the complex community of bacteria and other microbes, in the intestinal tract.
Studies suggest that people with PD harbor distinct gut microbiomes. By identifying gut microbiome changes, the effects of those specific changes on the body, and interactions between environmental exposure and genetic factors, Dr. Sampson hopes to link how insecticides trigger these defects of the intestinal tract and trigger Parkinson’s symptoms.
While therapies are available for some movement symptoms of PD, people with Parkinson’s may also deal with cognitive issues related to memory or attention. Dr. Wilkins is working to determine which PD symptoms are left unaddressed by current approaches, in hopes of developing novel treatments.
Neuro Talk: Strategies for Managing Parkinson’s Disease Symptoms
Each person’s experience with Parkinson’s disease (PD) is unique. Understanding how to manage symptoms can take time, but will ultimately empower you to live better with PD.
In our latest Neuro Talk, Chief Scientific Officer James Beck, PhD, discusses common movement and non-movement symptoms of Parkinson’s. Dr. Beck also explains available treatments and ongoing research related to both types of symptoms.
Parkinson’s Foundation Presents Scientific Posters at Sixth World Parkinson Congress
The World Parkinson Congress is a unique conference that brings everyone in Parkinson’s disease (PD) community together — from people living with PD and their care partners, to healthcare professionals, researchers, and organizations working to make life better for people with Parkinson’s. This year, thousands attended the event dedicated to Parkinson’s research and care, in Barcelona, Spain, from July 4 to 7.
Below are the scientific posters the Parkinson’s Foundation presented at the sixth World Parkinson Congress:
Research Findings
These findings focus on how we can make PD research more inclusive and why it is essential to involve people with Parkinson’s in the research process.
1. Characterizing the Frequency of Clinically Reportable Variants in Major Genes Established in Parkinson’s in a Large American Cohort
PD GENEration: Mapping the Future of Parkinson's Disease is research study that offers genetic testing and counseling, in English and Spanish, to people with Parkinson’s. This study aims to simplify access to clinical genetic testing to people with Parkinson’s and offer educational materials to clinicians on PD genetics, to help accelerate clinical trials in PD, improve PD care and research, and empower people with PD and their care teams.
Key Takeaways:
The study has enrolled 10,510 participants, consisting of 58% males and 14.7% racially diverse participants.
By providing genetic testing to all those interested and from all backgrounds, the study helps inform care, diversify the data, help engage people in research, and qualify more for enrollment in clinical trials for PD.
2. Curation of Parkinson’s Genes Performed By An International Expert Panel: A ClinGen Initiative
With genetic testing for PD becoming more widely available due to studies such as PD GENEration, there is still no single definition of PD-related genes and genetic panels in the diagnostic setting. To address this, we formed the Parkinson´s Disease Gene Curation Expert Panel, recognized by ClinGen, with the mission of defining the clinical validity of gene-disease relationships for PD and atypical parkinsonism.
Key Takeaways:
Our objective is to inaugurate an expert panel to assess the clinical validity of specific genes in association with PD. The council has published the clinical validity of these PD gene mutations: LRRK2, GBA1, PRKN, PINK1, SNCA, VPS35 and PARK7.
This expert panel will help guide precision medicine efforts in PD and enable informed FDA decision-making in future therapeutic trials.
The panel consists of 62 leaders worldwide representing different disciplines such as clinical neurology, genetics and molecular genomics.
3. Building a Coalition to Advance Engagement of Black and African American Communities in PD Research
There is an underrepresentation of Black and African American communities in PD research. The Parkinson’s Foundation worked alongside Black and African American research advocates, clinicians, social workers, nurses and researchers to develop a coalition to learn more about, and respond to, the needs and priorities of these communities.
Key Takeaways:
This coalition will help to build relationships and allies to advance health equity research.
The Parkinson’s Foundation will host a research advocate training, inviting 30 Black and African American research advocates to help drive research agendas/priorities and address research-related health disparities.
4. Outcomes and Impact of Capacity Building for Patient Engagement in Research Through a Patient Advisory Board Model at Academic Research Centers
Involving people with Parkinson’s and care partners in the research process alongside scientists has gained traction. Despite this interest, research teams still seek training on methods and best practices for working alongside people with PD. Members of the Parkinson’s Foundation patient engagement team co-created a pilot training for staff of five academic research centers to create patient advisory boards and incorporate people with PD into the research process.
Key Takeaways:
83% of staff reported the patient advisory boards were beneficial to the organization’s research mission and will continue these meetings.
The pilot training courses were generally successful in preparing staff to engage with participants in research through patient advisory boards.
These practices and model can be a guideline for other academic research centers looking to engage people with PD in the research process.
Care Findings
These studies focus on how to improve care for people with Parkinson’s.
5. Optimizing Hospital Care for People with Parkinson’s: A new professional education course detailing best practices
Each year, more than 300,000 Americans with Parkinson’s receive care in the hospital. Data shows that people with PD are at increased risk for hospitalization and, once hospitalized, are more likely to have avoidable complications and poorer outcomes. To increase health care professionals’ understanding of these risks, with support from the CVS Health Foundation, we created a free accredited three-part course highlighting best practices in hospital settings. Learn more about staying safe when hospitalized.
Course 1: Care in the Inpatient Setting
Highlights the challenges commonly seen in the hospital and strategies that can help improve outcomes for people with Parkinson’s. Learn more.
Course 2: Care in the Emergency Department
People with PD visit the emergency department for many reasons, including falls. This course teaches optimal care strategies and how to mitigate risk. Learn more.
Course 3: Care in the Outpatient Setting
Addresses several safety risks when caring for a person with Parkinson’s who is undergoing an outpatient procedure. Learn more.
6. Improving Parkinson’s Care in Senior Living Communities and Home Care Agencies in the U.S.
Community Partners in Parkinson’s Care has worked to provide staff education and resources to enhance staff knowledge and confidence in the provision of PD care. Training methods include site champion training, which provides an online curriculum. Outcomes including staff surveys and medication audits have been collected over time to assess awareness of PD care needs.
Key Takeaways:
19,000+ health care professionals across many disciplines completed the online curriculum.
Staff surveys have shown improvements in awareness of PD care needs following completion of the program’s online education curriculum.
Lessons learned include more education surrounding PD medication administration, including administering PD medications within 15 minutes of the scheduled time.
These results indicate continued need of expanded programming for home care agencies and senior living communities to receive ongoing PD education at all sites.
7. Pathway to Parkinson’s Foundation Exercise Education Accreditation Program & Competencies for Exercise Professionals
Exercise professionals play an important role in the care of people with Parkinson’s, but to date, there have been no unified guidelines or procedures in place to ensure that these professionals are competent to help people with PD. The Parkinson’s Foundation, in collaboration with psychometric methodologists, created a two-phase process to define competencies for exercise professionals and a framework for an accreditation program to recognize exercise education programs and courses.
Key Takeaways:
Competencies allow for exercise professionals to describe the knowledge, skills, and abilities needed to provide optimal individual or group exercise sessions for individuals with Parkinson’s
The Parkinson’s Foundation will accredit education programs and courses that provide the knowledge and skills necessary to create a safe and effective exercise experience for people with Parkinson’s.
8. Utilizing the Parkinson’s Foundation Five Domains of Exercise Professional Competencies to Map Five Criteria for Exercise Education: A Pilot Study
The Parkinson’s Foundation sought to develop condition-specific competencies for exercise professionals (personal trainers and group exercise instructors) who work with people with Parkinson’s.
Key Takeaways:
We developed a pilot accreditation process for Parkinson’s exercise education programs and continuing education courses to validate exercise competencies.
The accreditation process accounts for the variety of exercise professionals (personal trainers, group exercise instructors, physical therapists, other healthcare professionals) who help people with PD.
Education Findings
These studies focus on trends in the Parkinson’s community and aim to provide information that can empower people in the PD community.
9. Transforming Parkinson’s Education & Care in Underserved Populations: Engaging & Addressing American Indian and Alaskan Native Communities
Though there are many educational resources for Parkinson’s, very few address American Indian and Alaska Natives (AIAN) specifically. These populations have experienced historical trauma, systemic racism, and a lack of funding and access to health care services. We set out to understand how PD awareness and management is currently approached in tribal health clinics and Indian Health Services, worked to identify key partners and advisors, and to pilot outreach and education programming that reaches and engages AIAN populations and organizations.
Key Takeaways:
A lack of PD information is available across tribal health organizations, demonstrating a need for more general outreach, basic education, and resource accessibility.
These initial efforts will continue to advise upcoming Parkinson’s Foundation programming for AIAN populations and tribal public health organizations.
The long-term goal is to create lasting partnerships and lines of communication to further develop responsive education and awareness initiatives.
10. Caregiving Through the Progression: Themes from Parkinson’s Care Partners through early, mid-stage, and advanced Parkinson’s
The Parkinson’s Foundation conducted interviews with three Parkinson’s care partners for the Care Partner Program online course Caregiving Through the Progression. This poster highlights their unique experiences:
Early Caregiving: Julia shares the turbulent road to her husband Phil’s diagnosis and her experience of Black cultural norms. She discusses these challenges, and how the strength of their core family provided unique support.
Mid-stage Caregiving: Dick shares his experience as a male care partner expressing emotions in a healthy and productive way. He discusses how he prioritizes his spiritual and emotional wellness and how he and Chris prioritize communication.
Advanced Caregiving: Edna shares the impact her husband Mark’s PD had on their daughters, who grew up with Parkinson’s as a part of their childhood. She discusses the cultural norms she experienced as a Filipino woman.
11. Care Partners in Parkinson’s: Who calls the Parkinson’s Foundation Helpline and Why?
Our Helpline provides answers about PD, referrals to health professionals, support groups and wellness programs. This poster describes the reasons care partners contact the Helpline between 2016 to 2022.
Key Takeaways:
The Helpline received 21,489 first-time callers and emailers where the gender of the person with Parkinson’s was known. 46% were cases with a spouse/partner and 33% were from an adult child.
Nearly 81% of spouse/partner Helpline inquiries were regarding men with Parkinson's, despite men accounting for 60% of Parkinson's cases.
Because male spouses/partners contact the Helpline less often than female, this study suggests a need for increased outreach toward male spouses/partners. This outreach could help male care partners gain information and resources to support their caregiving, and thus have a positive impact on the well-being of women with PD.
Stay up to date with the latest Parkinson’s Foundation programs, research and happenings in our Parkinson’s Today blog.
View All 2023 Posters
Discover the scientific posters the Parkinson’s Foundation presented at the sixth World Parkinson Congress.
Neuro Talk: 3 Promising Developments in Parkinson’s Research
The Parkinson’s Foundation funds the most exciting and promising research ideas in the Parkinson’s disease (PD) field. We believe the next research breakthrough can occur in any lab, from any researcher, which is why we support all types of scientists. In this Neuro Talk, Chief Scientific Officer James Beck, PhD, is joined by three researchers whose studies were funded by the Parkinson’s Foundation to explain how research furthers our understanding of PD.
