It’s heartening to hear stories like that of Janet Charchuk, a 42-year-old woman from Alberton, P.E.I., who’s doing everything she can to live a full, healthy life despite knowing that her Down syndrome puts her at a much higher risk for early-onset Alzheimer’s disease.
She’s proactive. She watches her diet. She exercises. She keeps her brain sharp with word searches and stays active socially working at an equine therapy ranch, competing in the Special Olympics, and even serving on the board of Down Syndrome International. She’s not just surviving. She’s thriving.
But let’s be honest: Janet is doing her part. Is the system doing its part for people like her?
A recent study estimated that in 2020, more than 22,000 people in Canada were living with Down syndrome and 30% of them were over 40. Yet the medical system continues to treat Down syndrome primarily as a pediatric issue. That’s not just outdated it’s dangerous.
The average life expectancy of someone with Down syndrome in Canada is now 60. That’s up from a tragic 4 years in 1950 and 53 in 1970. It’s a testament to medical advances and better social support. But we’re still falling short by over 20 years compared to the general Canadian population.
Why? One major reason is Alzheimer’s disease. According to Dr. Brian Skotko, director of the Down syndrome program at Massachusetts General Hospital, Alzheimer’s is now the number one cause of death in adults with Down syndrome. The genetic link is clear: chromosome 21, which people with Down syndrome have an extra copy of, also plays a role in producing amyloid plaque the substance linked to Alzheimer’s.
We know this. And yet, the care system continues to fail adults with Down syndrome.
Primary care doctors often aren’t trained to recognize or treat health conditions in this population. As Heidi Diepstra of Toronto’s Surrey Place points out, this leads to “diagnostic overshadowing” when doctors dismiss symptoms as part of Down syndrome instead of identifying real, treatable health conditions like depression, sleep apnea, or hypothyroidism.
We already have tools like the Down syndrome “health watch” checklist developed in 2011 that could change this. But they’re not being widely used. Why not?
The truth is, the system hasn’t caught up to the reality that people with Down syndrome are living longer, fuller lives. They are adults with adult needs physical, emotional, social, and cognitive. The supports in place must reflect that.
It’s not just up to doctors. Families and caregivers also need to be vigilant. Early intervention is key. Routine check-ups, attention to mental health, good nutrition, physical activity, and sleep management these are not luxuries. They are essentials.
And let’s not forget the social dimension. People with Down syndrome need fulfilling, stimulating lives just like the rest of us. That means meaningful work, strong friendships, hobbies, love, and autonomy. These are not just “nice-to-haves.” They are core ingredients to staving off cognitive decline and supporting mental well-being.
We owe it to people like Janet and the thousands of adults with Down syndrome in Canada to do better. That means updating our medical systems, educating health professionals, funding adult-centered care pathways, and most importantly, shifting our mindset.
People with Down syndrome are not children forever. They grow up. They have dreams. They age. And they deserve the same chance at a long, healthy, and meaningful life as anyone else.
It’s time we gave it to them.
