A new ‘mindset’ to help those living with Down syndrome

Who: Canadian Down Syndrome Society and FCB, with BrainHQ and Anglia Ruskin University in the U.K.

What: “Mindsets,” a research study and awareness campaign about how physical exercise can improve cognitive function for people with Down syndrome.

When & Where: The initiative kicked off March 21, World Down Syndrome Day. There is no set end date for the research, but the hope is to have published results before the end of the year. The research and a call for people to participate is being promoted through PR, social media and print ads in The Globe and Mail.

Why: Each year, FCB works with the Canadian Down Syndrome Society to identify a specific problem for the Down syndrome community, said Nancy Crimi-Lamanna, chief creative officer at FCB Canada. “Then we find the most powerful way to solve it” (the approach has led to initiatives such as this and this).

The goal this year is to change attitudes and thinking about physical exercise for those living with Down syndrome. Many experts, and therefore parents, believe too much physical activity is bad for people with Down syndrome. “My wife and I have even heard some doctors go so far as to discourage strenuous exercise due to medical concerns such as heart defects and low muscle-tone,” said Ben Tarr, a board member of CDSS and father of Leo, who has Down syndrome (Tarr is also president of Leo Burnett Canada).

But there is considerable anecdotal evidence that exercise can be beneficial, said Crimi-Lamanna. The goal became making physical exercise prescribed therapy for people living with Down syndrome. “How do we get doctors to believe?” she said. “And you need data for the science community and doctors, and families to believe, because the doctors tell the families and the caregivers what they need to be doing to improve the lives of their kids.”

How: 200 people are being recruited to take part in the eight-week study run by Dr. Dan Gordon, a paralympian and associate professor in cardiorespiratory exercise physiology at Anglia Ruskin University. Participants will download the Mindsets app, which will record both physical data (captured from Fitbits) along with data from brain exercises provided by BrainHQ.

“We already know that exercise can provide enormous benefits to overall health and well-being and have seen many isolated examples of exercise having an impact on cognition,” said Gordon. “But definitive data just doesn’t exist yet, and that’s why a study of this size is so important.”

The campaign inspiration: The problem currently is that the evidence is anecdotal, said Crimi-Lamanna. One of the stories they came across in their research was that of Chris Nikic, the first person with Down syndrome to complete the Ironman challenge. Chris’s dad Nik saw the benefits of exercise for his son.

“His memory improved, his social skills, and everyday tasks that he used to have problems with became much easier for him,” said Nik in a release. “His confidence has gone up, too. The impact has been incredible.”

“The harder he worked out, the more [Nick] saw a change in his cognitive abilities and his social skills,” said Crimi-Lamanna. “[That] sparked a light bulb: can we prove that there’s a link, and can we actually impact cognition through exercise?”

“I think we’ll absolutely see an impact… We know that when we work out, we feel better, our mental space is better I think there’s a lot of good anecdotal evidence to suggest this will be successful.”

And we quote: “Even a slight increase in cognition can lead to an incredible shift in the quality of life for a person with Down syndrome. This would allow for more independent living and make activities of daily living much easier to accomplish.” — Dr. Dan Gordon, associate professor in cardiorespiratory exercise physiology at Anglia Ruskin University.

 

David Brown