As a fitness professional, working with a client with intellectual and developmental disabilities (IDD) can present a uniquely difficult, though rewarding, experience. People with IDD face unique barriers to engaging in and adopting regular fitness regimens, including individual physical and cognitive limitations, time constraints and transportation restrictions, and access to facilities and appropriate programming.¹ Therefore, tailoring a fitness intervention to the individual client is of even greater importance in this population. 

Preference Assessment 

It is no secret that it’s easier for people to adopt a regular physical activity routine if they enjoy the activities they’re performing. Administering a preference assessment as part of a client’s pre-participation examination is a great way to find intrinsically motivating factors you can incorporate into their training sessions. A preference assessment is a short battery of questions — such as “What are your favorite upbeat songs?” “What are your favorite animals?” or “What do you like to talk to friends about?” — that tells you about your client’s likes and drives. The assessment should include a lot of open-ended questions so as to capture as many motivating factors as possible. Adapting your training sessions based on the information you collect in this preassessment can go a long way to improving your client’s enjoyment — and, therefore, long-term adoption — of regular exercise.

Practical Example: An ongoing trial in our lab involves VO₂ peak treadmill assessments for adults with Down syndrome (DS)². Along with the difficulty of the actual exercise, the participant also has to wear a lot of equipment during the assessment, including a silicon facemask and breathing valve. After learning about the participants through a preference assessment, we can make the mask and valve more relatable by saying, “This is your superhero mask” or, “You look just like an astronaut” to reduce the anxiety they might experience when wearing it.

Physical Differences

Understanding the physical differences certain conditions cause will improve your clients’ safety. For instance, clients with Down syndrome have increased levels of hypotonia (low muscle tone) and ligamentous laxity, both of which you’ll want to consider when introducing foundational movements and ensuring proper form. Those with other IDD may have an aversion to sound or touch, which is also important to gauge beforehand. Safety is paramount when working with clients with IDD, so administering a comprehensive pre-participation screening that involves an in-depth health history will allow you design a program that’s both safe and effective.

Practical Example: Roughly half of individuals with Down syndrome have congenital heart defects (CHD)³.Although small, exercise inherently increases the risk for heart-rhythm and other heart-related changes. Performing a pre-exercise screening will help identify any CHD so you know what clinical signs to be aware of during the client’s fitness assessments and exercise sessions.

Travel Barriers

It’s important to think outside the box when you’re addressing travel-related barriers to exercise. What can you do when your client can’t get to you? Virtual training visits via videoconferencing software and in-home training are both great ways of increasing your clients’ access to exercise, allowing them to exercise in a familiar environment that reduces distractions and potential sensory aversions. Although their access to equipment may be limited when using these methods, a well-developed fitness program allows for flexibility and adaptation to different environments. Using a combination of facility-based training, virtual visits and in-home training can benefit individuals with IDD by making the program more enjoyable. There are limitations, of course: Virtual training requires access to a device capable of running videoconferencing software, and the fact that you’re not physically present may make ensuring client safety more difficult. And in-home training requires you to travel, adding time and expense.

Practical Example: For several years, our lab has delivered remote group-exercise sessions to adolescents and adults with IDD as part of internally and externally funded trials. These sessions involve a staff member who instructs 4-8 participants via videoconference. These sessions are aimed at improving a particular component of fitness and adapt routine fitness movements to be more relatable. Weekly lesson themes include animal movements, winter sports, hiking, yoga, etc. With the obvious increases to access and reduction in caregiver burden also comes the benefit of an added social component — the interpersonal interaction that occurs participant-to-participant and participant-to-instructor.

Working with clients with IDD presents a unique experience for the fitness professional. It is important to understand barriers to physical activity and ways to mitigate them. Pre-participation health screenings and preference assessments will help you develop a safe, effective and relatable program. After all, the goal of any fitness program is long-term adoption, so implementing a multifaceted, adaptable approach will ensure a good experience for both you and your client.

References: 

1. Must A, Phillips SM, Curtin C, et al. Comparison of sedentary behaviors between children with autism spectrum disorders and typically developing children. Autism 2014; 18(4): 376-384.
2. Ptomey LT , Szabo-Reed AN,Martin LE, et al. The Promotion of Physical Activity for the Prevention of Alzheimer's Disease in Adults with Down Syndrome: Rationale and Design for a 12 Month Randomized Trial. Contemp Clin Trials. 2020. 19(1):100607.
3. Irving, C.A., & Chaudhari, M.P. Cardiovascular abnormalities in Down's syndrome: spectrum, management and survival over 22 years. Arch Dis Child. 2012. 97(4): p. 326–330.

Joseph Sherman, M.S., is a clinical research coordinator with the Division of Physical Activity and Weight Management at the University of Kansas Medical Center who specializes in physical activity modifications and lab-based fitness assessments for special populations, including individuals with intellectual and developmental disabilities.

Cardiovascular disease remains the leading cause of death in women, and hypertension is a major contributing factor, particularly after menopause. The sympathetic nervous system — historically viewed as the “fight or flight” part of our autonomic nervous system — is involved in regulating blood pressure (BP) and can contribute to the development of hypertension. Previous studies have shown that BP increases more in postmenopausal women during exercise compared to younger women. This exaggerated exercise-induced BP response increases cardiovascular risk in postmenopausal women, yet the underlying mechanism(s) remain unknown. Moreover, it is unclear if these exaggerated BP responses are due to aging or if they are related to declines in ovarian hormones like estradiol that are associated with menopause.

In our current study in the March 2022 issue of Medicine & Science in Sports & Exercise_®, we examined the BP response during isometric handgrip exercise. We sought to determine if the large increases in BP during exercise in postmenopausal women are due to changes in the sympathetic nervous system. We directly measured sympathetic nervous system activity using a technique called microneurography. This method allows us to assess how frequently the nervous system is firing at rest and in response to isometric handgrip exercise. This measurement, along with beat-to-beat BP, was compared between young premenopausal women and postmenopausal women. We also tested a separate group of postmenopausal women before and following one month of transdermal estradiol therapy. Our data show that the sympathetic nervous system is overactive and increases to a greater extent during handgrip exercise in postmenopausal women, contributing, in part, to the larger increases in BP. However, these large increases in sympathetic nervous system activity and BP during handgrip exercise were attenuated in postmenopausal women after one month of estradiol therapy. We conclude that both aging and changes in estradiol that occur with menopause contribute to the exaggerated increases in sympathetic nervous system activity and BP during isometric exercise in postmenopausal women.

Since the release of the Women’s Health Initiative data roughly 20 years ago, numerous research studies have demonstrated that hormone therapy can be safely used by the majority of postmenopausal women. Although hormone therapy may not serve as a primary prevention to reduce the development of cardiovascular disease, it has become clear that it does not necessarily carry the risk once thought if used within established guidelines. Our data show that transdermal estradiol therapy can attenuate sympathetic nervous system activity and BP during exercise. However, in terms of primary prevention for cardiovascular disease, it is well established that exercise is a cornerstone therapy for lowering BP and improving cardiovascular health. Our data bring awareness to the importance of monitoring BP in women during physical activity while reinforcing the need to specifically consider BP in exercise-prescription guidelines for women. Notably, recent data suggest that the risk for development of cardiovascular disease begins at a lower BP threshold for women compared to men.

The inclusion of women in research is paramount for improving human health. Our findings demonstrate that studies focused on women remain important to gain a better understanding of cardiovascular disease risk in women. 

Megan M. Wenner, Ph.D., is an associate professor in the Department of Kinesiology and Applied Physiology at the University of Delaware. She received a Ph.D. in physiology from the University of Delaware and completed her postdoctoral training at the John B. Pierce Laboratory and Yale School of Medicine. Dr. Wenner’s research focuses on cardiovascular health in women throughout the lifespan, with a focus on sex hormones and menopause.

Paul J. Fadel, Ph.D., is a professor in the Department of Kinesiology and associate dean for Research at the University of Texas at Arlington. Dr. Fadel’s research focuses on neural cardiovascular control mechanisms in human health and disease, with a specific emphasis on the sympathetic branch of the autonomic nervous system.

Viewpoints presented in SMB commentaries reflect opinions of the authors and do not necessarily represent ACSM positions or policies. Active Voice authors who have received financial or other considerations from a commercial entity associated with their topic must disclose such relationships at the time they accept an invitation to write for SMB.

My name is Vanessa Valle, and I’m an exercise physiologist at the Cardiac Rehabilitation and Wellness Center at the University of California, San Francisco (UCSF). Our program opened in October 2019 and, just as we were gaining some kind of semblance of momentum, we shut down due to the COVID-19 pandemic. Every policy and procedure that we’d barely finished writing changed, and my role as an exercise physiologist took a different identity.

So I could write about what I do as an exercise physiologist in a cardiac rehab clinic — write exercise prescriptions, monitor patients’ telemetry and blood pressure — but we all know that. I’m going to talk about our roles as listeners and how my role as health care provider during the pandemic challenged me in a different way.

Before the pandemic, our center saw seven patients at a time. It was a fun, social group setting, which was something I loved about cardiac rehab. When COVID-19 started rearing its ugly head, we decided to shut down since many patients became too afraid to come in and, honestly, we as a staff were scared too. We decided to work from home, and I couldn’t fathom what that would look like, especially since IT sure had a hard time configuring my laptop for home use. I was given the task of calling current patients for a weekly check-in and to keep them apprised of our projected reopening.

I became their social outlet. I would call to just check in and would speak to a patient for almost an hour — getting to learn about them as a person and not only as a patient. During those first few weeks, I often felt like I was the only person they regularly got to talk to. And maybe exercise was only 25% of our conversation, but there was a lot of value in that other 75%.

My role changed from writing out exercise prescriptions to figuring out how to get patients to simply move instead of being glued to the TV. I learned so much about a patient’s family, but trying to convince the patient that they need to take care of themselves when they were worried about their aging parents and figuring out how to work from home plus homeschool their kids. I would worry about a patient that lived in an unsafe part of town but only wanted to walk late at night because there were less crowds. It was relatively easy to demonstrate bicep curls to a patient in the center but a whole different challenge to convince that same patient that doing laundry does not count as exercise. And that watching the news is not helping their heart health either.

I had this one wonderful patient who was quite the introvert and always had high blood pressure, which he attributed to “white coat syndrome.” In the first couple weeks of the pandemic, he revealed to me that he was feeling quite lonely. His main social outlet was volunteering at Golden Gate Park helping maintain the gardens. We didn’t focus too much on exercise initially, but I enjoyed talking about his children and Golden Gate Park, and we spent a lot of time helping him figure out Zoom for his medical appointments. Eventually, I was able to get him to use Golden Gate as his playground for exercise. I learned he took up photography in his retirement years and loved to take pictures of wildlife at Stow Lake. So we used his number of laps around Stow as measurements of progress and using the benches and his camera equipment to complete weighted squats. I shared his photography with my coworkers, and we became his friends, giving him a social outlet.

Another patient was eating too many carbs and high-sodium processed foods because he didn’t know how to cook. He relied on his job for free lunches, and his physical activity consisted of walking from building to building. I had to figure out how to motivate a patient who is newly working from home, lacks intrinsic motivation to exercise and has a high-stress, sedentary job. I foolishly asked him if he had a cast iron pan to use as a substitute for weights. He got a good laugh out of that since he did not cook whatsoever! I learned he used to play ice hockey, so I developed an exercise program that included skate jumps and wood chops with the hockey equipment he dug out — plus exercises he can do while his dog chooses to sniff on their walks instead of consistently maintaining the 30-45 minutes of moderate walking intensity that we wish our pups understood.

As we started to slowly reopen, our initial group setting of seven went to a maximum of two patients. Instead of our usual routine of using cardio equipment, we spent more time working one on one and developing an exercise routine patents could complete at home with no exercise equipment. From those months of weekly phone calls, I learned to develop highly individualized exercise programs, spending a lot of time on YouTube finding the perfect exercise video for each patient.

I have a new appreciation — actually a new passion — for teaching leg-strengthening and balance exercises. In my job prior to UCSF, the daily roster consisted of three staff members working with 12 patients. It was almost impossible for one staff member to stay with one deconditioned patient doing weights and balance exercise when you had to help get blood pressures and rates of perceived exertion. Now, I spend more time talking to patients about what exercises they can do at their kitchen countertops, such as heel raises and side kicks. They enjoyed doing some exercise while waiting for water to boil! Initially, I felt guilty taking time away from their NuStep machine and cardio exercises since that was what cardiac rehab centers focus on. However, knowing that our patients would never join a community gym due to COVID-19 surges, we found it more important to develop a routine they could do at home.

So as more mandates are getting lifted and we start to increase our capacity, I’ve learned to not get too focused on taking blood pressures and whipping out exercise prescriptions on the cardio equipment, but instead to think of our patients outside the cardiac rehab center — getting to know them beyond their medical history and to be able to describe them other than what their EF may be. To discover what scares them and what motivates them, and to make exercise more meaningful to them. Instead of calling an exercise by its formal name, like “frontal shoulder raise,” I’ve called it “lift your cat” or “lift your grandchildren.” Does the patient miss travel? I’d call the “overhead press” “luggage in the overhead bin” to make it more meaningful and practical. Do they miss dancing? Patients will appreciate it if you curate YouTube home Zumba videos for them.

Something patients often suggest in our satisfaction surveys is that we have some kind of follow-up months or a year after they complete the program. Unfortunately, I’ve never been at a cardiac rehab that had the staffing to do that. It’s too easy for patients to stop exercising after cardiac rehab since they no longer have the accountability we provide them or access to cardio machines. But if we can spend time creating a very personalized exercise program, particularly more time with a transition-to-graduation plan, we can create a long-lasting motivation that they can find in their everyday life. Maybe they’ll actually buy that cast iron pan.