The Canadian Down Syndrome Society (CDSS) is partnering with a British university and a cognitive brain-training app to launch an international research study looking at a potential link between exercise and improved cognitive function for those with Down syndrome.
The study aims to prove what the CDSS says is "anecdotal evidence" that exercise can help with memory, speech, social skills and other abilities in people with Down syndrome. The charity says physical activity hasn't been a priority because the research hasn't been done.
"There is very little empirical evidence in this area to help support the medical community in recommending [exercise] as part of the imperatives in the treatment programs," CDSS Toronto board member Ben Tarr said.
The study, called Mindsets, launched its pilot phase on March 21, which is World Down Syndrome Day. Researchers are looking to recruit at least 200 participants to begin the full eight-week portion next month.
They will collect data from participants wearing Fitbits as they take part in physical activity at home, including light jogging or exercise on a stationary bike. The researchers will compare that to data gathered from other participants completing mental exercises and games on the BrainHQ app.
"What we're hoping this research will allow is to show that exercise is a really powerful medicine," lead researcher Dan Gordon said.
He says he's confident the study will show a link. If so, the goal is to publish the findings and make exercise an integral part of therapy plans for people with Down syndrome.
Exercise improved son's speech and learning, dad says
Gordon, who is also an associate professor in the area of cardio-respiratory exercise physiology at Anglia Ruskin University in Cambridge, England, says there are many factors contributing to why exercise hasn't been prioritized for people with Down syndrome.
He says sociological barriers include access to facilities and needing a support person to help with exercise, while physiological ones can include weak muscle tone and "an unusual cardiovascular response" to exercise.
"There's been concerns that they're an at-risk population for doing exercise when the truth is the opposite. That actually by doing the exercise, it has a benefit on the heart, on the muscles," he said.
Tarr's nine-year-old son Leo is an example of that. Tarr says exercise wasn't part of his therapies, especially because Leo had a congenital heart defect and low muscle tone.
"Exercise was never really a priority and almost it was something that we feared just because of the fragility of his heart," he said.
But, after heart surgery at the age of four, Leo's parents felt more comfortable pushing him toward more physical activity. Not only did they see an improvement in his energy levels and physical capabilities, they say his cognition took a big leap forward.
"His speech, his learning, everything just took a massive upward trajectory," Tarr said.
"It was really positive."
Now, Tarr describes Leo as rambunctious; he loves to jump, kick, run and especially swim. Tarr says he hopes the study ends up promoting the need for exercise as part of full therapy plans for other families.
Study also aims to combat misconceptions
The Mindsets study also includes an awareness campaign to show what people with Down syndrome are capable of.
Last year, 21-year-old Chris Nikic from Orlando, Florida became the first person with Down syndrome to complete the Ironman Triathlon. He continues to compete and will be creating inspirational videos and communicating with participants to keep them motivated.
His father Nik says since Chris began training, he went from a sedentary, isolated lifestyle to one where he's part of a community, contributing to society and making a living on his own.
"The whole experience has been life changing," Nikic told CBC Toronto.
"The change has just been absolutely amazing to me because I never thought I would see that kind of progress."
Nikic says he hopes the study inspires families and experts to understand the benefits of exercise so other people like Chris can experience the growth he has.
"I have big dreams," Chris said.