A longstanding challenge for the Canadian Down Syndrome Society (CDSS) is society’s bias against the community, showcased through gaps in support, research, and funding.

Individuals with Down syndrome have long been excluded from exercise, a crucial aspect of overall health and well-being. How can we convince doctors to encourage, or even prescribe, exercise for their patients with Down syndrome?

Our long-term challenge is to finding solutions within the “growing up” phase of the journey, like inclusion in the world of exercise. As this generation of individuals with Down syndrome begin to outlive their primary support system, any solutions to improve their quality of life and increase independence is extremely important.

We launched on World Down Syndrome Day, with the goal of recruiting individuals with Down syndrome from all over the world to participate. Our long-form launch film drew awareness of the issue, challenged stereotypes about the community’s participation in exercise, and encouraged individuals from the community to get involved.

Dr. Dan Gordon, Paralympian and Associate Professor in Cardiorespiratory Exercise Physiology at Anglia Ruskin University (ARU) led the research study, and Dr. Henry Mahncke and his team at BrainHQ aided in selecting the appropriate cognitive tests.

Screened participants were randomly placed in one of four cohorts to meet the study’s requirements. To precisely measure the impact of exercise on their abilities, researchers recorded standard physical and cognitive assessments at the beginning and end of each cohort study.

Participants were provided a Fitbit, donated by Google, to record their physical activity and access to the Mindsets app to record their cognitive exercises.

Background:

Down syndrome is the least studied and least funded genetic disorder, even though it is among the most common worldwide, affecting over six million people. The issues faced by individuals with Down syndrome are perceived as niche by research scientists, lawmakers, and government officials. Therefore, the needs of individuals with Down syndrome tend to be underfunded no matter their importance.

This means that medical professionals only have access to outdated research. As a result, doctors often recommend against exercise for their patients with Down syndrome.

Athletes with Down syndrome have found that exercise strengthens both body and mind. Ironman Chris Nikic, for example, has experienced improvements in his memory, learning, social skills, and self-confidence. This linkage could be very meaningful for people with Down syndrome, as an increase in cognition could give them greater independence and a better quality of life.

Life expectancy of people with Down syndrome has increased significantly over the years, meaning that this is the first generation who are likely to outlive their primary caregivers—their parents. This means that research into treatments or activities that could improve cognition and enable people with Down syndrome to live more independently are both critical and urgently needed.

Creative Challenge:

To encourage exercise and truly change behaviour, we had to change mindsets about the benefits of exercise among doctors, who are important influencers in individuals’ exercise journeys. But showing the power of exercise wasn’t enough for this very skeptical audience. We had to prove it with data and evidence in order to be taken seriously and ultimately change the advice they give their patients with Down syndrome.

Solution:

Insight: Exercise holds the power to improve cognition for people with Down syndrome, but it’s never been scientifically proven, so doctors remain unconvinced.

Idea: Commission the world’s first research study on the impact of exercise on cognition for people with Down syndrome. Introducing The Mindsets Paper, an evidence-based, globally unprecedented study to definitively prove the link between fitness and cognition for individuals with Down syndrome.

Execution:

The Mindsets Paper had three distinct phases:

1. Study inception and search for academic partners

2. Recruitment of people with Down syndrome as participants in the study

3. Publication of the study in medical journals and presentation of the results at medical conferences

The Mindsets Paper research was led by Dr. Dan Gordon, Associate Professor in Cardiorespiratory Exercise Physiology at Anglia Ruskin University and former Paralympian. Dr. Henry Mahncke and his team of neurological scientists at BrainHQ led the cognitive training and the measurement of cognitive impact. Finally, we partnered with Google, who donated all the required Fitbits.