Canadians With Down Syndrome Live Until 60 On Average

A recent Canadian study has shed light on the life expectancy of individuals with Down syndrome, revealing an average lifespan of approximately 60 years. This figure, while significantly lower than the national average, represents a considerable increase compared to the mid-20th century.

Janet Charchuk, a 42-year-old living in Alberton, P.E.I., is among the growing number of Canadians with Down syndrome living well into adulthood. Aware of the increased risk of early-onset Alzheimer’s disease, a common concern within the community, she proactively manages her health. “It is something that I do worry about at times,” she confessed, “but I’m doing everything I can to prevent it.” Her preventative measures include diet, sleep, exercise, socializing, and brain exercises like word searches.

It wasn’t what anyone expected, the shift towards longer lives and the associated needs.

The study, published in the journal *Genetics in Medicine*, estimates that in 2020, there were 22,367 people with Down syndrome in Canada, with 30 per cent aged 40 and older. Dr. Brian Skotko, the study’s senior author, highlighted the progress made: “The average lifespan of someone with Down syndrome is about 60 years old.” This marks a stark contrast to the 1970 average of 53 years, and the 1950 figure when most individuals with Down syndrome died in childhood, with an average age of just four years.

While advancements in healthcare and societal inclusion have undoubtedly contributed to this increase, significant disparities remain. The Canadian average life expectancy is 82 years, leaving a considerable gap.

According to Dr. Skotko, Alzheimer’s disease is a primary factor limiting lifespan for people with Down syndrome. “The number one cause of death in adults with Down syndrome are complications related to Alzheimer’s,” he explained, citing risks like falls, memory loss, and choking.

The link between Down syndrome and Alzheimer’s lies in chromosome 21. People with Down syndrome have an extra copy of this chromosome, which also contains the gene for amyloid plaque, a hallmark of Alzheimer’s disease.

These findings are part of a broader, global initiative spearheaded by Dr. Skotko to accurately estimate Down syndrome populations in various countries, including the U.S., Australia, New Zealand, and throughout Europe. This data is crucial for advocacy, policy development, and resource allocation.

Laura LaChance, co-author of the study and Executive Director of the Canadian Down Syndrome Society, emphasizes the importance of understanding the needs of adults with Down syndrome: “Because individuals with Down syndrome didn’t live that long historically, the system still really treats Down syndrome as a pediatric issue, a children’s issue.” She argues that support systems haven’t kept pace with the increasing number of adults with Down syndrome, leaving a void in tailored inclusive strategies and pathways.

This issue seemed to exist in silent process for decades, with medical and social systems lagging behind. The shift has suddenly manifested as the population aged into adulthood. Now, there’s growing public awareness, and the call for improved support is louder than ever.

• **Increased Alzheimer’s Risk:** Individuals with Down syndrome face a higher risk of developing Alzheimer’s disease at an earlier age.
• **Systemic Lag:** Support systems and medical practices are often geared towards pediatric care, neglecting the needs of aging adults with Down syndrome.
• **Preventive Care:** Proactive screening for various health conditions, including cardiovascular risks, underactive thyroid, and sleep apnea, is vital for extending lifespan and improving quality of life.
• **Societal Inclusion:** Ongoing efforts to promote inclusivity, engagement, and intellectual stimulation are crucial for maintaining cognitive health and overall well-being.

Doctors and advocates are working to address these gaps. A key strategy involves educating primary-care providers about the increased risks adults with Down syndrome face and urging them to screen for specific conditions. Heidi Diepstra, who leads the developmental disabilities primary care program at Surrey Place in Toronto, stresses the importance of preventive care. “Adults with Down syndrome might not be able to communicate their symptoms as clearly or go to a doctor early. So preventive care is very important — otherwise we’ll miss those diagnoses,” she said.

Diepstra and her team have developed a Down syndrome “health watch” checklist, published by the College of Family Physicians of Canada, to help primary-care providers avoid “diagnostic overshadowing” , attributing symptoms solely to Down syndrome instead of investigating underlying conditions like depression or hypothyroidism. Despite its existence since 2011, Diepstra believes the checklist needs wider adoption to effectively meet the needs of patients with Down syndrome. She shared, “(We) know from research data that health disparities continue to exist for people with IDD (intellectual and developmental disabilities).”

Dr. Liz Grier, medical director of Ongwanada Developmental Services in Kingston, Ont., notes improvements in physical and emotional care, which has impacted healthier lives, but insists there’s room for progress. “There’s better involvement of both medical and social service supports in terms of engaging day programming and other activities,” she explains, but advocates for greater vigilance from family members and caregivers in monitoring physical and mental health symptoms for timely screening and treatment.

Grier emphasizes that the risk of Alzheimer’s can be managed through medical interventions like Vitamin B12 supplementation, sleep apnea treatment, and promoting an active, stimulating lifestyle. “Keep the brain stimulated, keep the brain healthy with the right vitamins and nutriens that it needs, stay active from a physical health perspective … all of those pieces contribute,” she said.

On social media, the study has sparked conversations. One X.com user commented, “It’s encouraging to see lifespans increasing, but we need to address the quality of those years.” Another Facebook post expressed concern: “My brother has Down syndrome, and I worry so much about Alzheimer’s. What can I do to help prevent it?” One particularly poignant instagram comment read, “It’s not just about living longer, it’s about living well.”