Adults and Seniors with Down Syndrome Deserve Care
In 1950, only 1% of adults with Down syndrome lived to 40 years of age.
Today, over 30% of the population is over 40, but healthcare systems have not evolved. This leaves healthcare professionals underprepared, caregivers overwhelmed, and aging Canadians with Down syndrome without adequate care.
CDSS is leading several data-guided initiatives to close this urgent health equity gap:
The Accredited Down Syndrome Course for Healthcare Professionals will provide specialized training and information to improve confidence and quality of care.
The Mindsets Wellness Program empowers adults with Down syndrome to build healthy habits in fitness, nutrition, and mental health right from home.
Today and Tomorrow: A Guide to Aging with Down Syndrome is a comprehensive resource for caregivers with information on health concerns, fitness, grief, and more.
To continue this urgent work in 2026, we need your support.
Donate today to give aging adults with Down syndrome the care they deserve.
“Brandon deserves a healthcare system that understands him not just because I’m there, but because every healthcare professional has the knowledge and tools they need to support him.”
“For many years, my son Brandon was cared for by a physician who knew him well and appreciated the complexities of his health. When that doctor retired, I suddenly found myself guiding new healthcare providers who didn’t yet have the experience with Down syndrome and aging adults. I became Brandon’s constant advocate, the person who could speak up, explain, and make sure he received the care he needed. Don’t get me wrong – I’m grateful I can do this for him. But like so many parents aging alongside their adult children, I worry about the day when I won’t be here to speak on his behalf. Brandon deserves a healthcare system that understands him not just because I’m there, but because every healthcare professional has the knowledge and tools they need to support him.”
Paula, Brandon’s Mother
“Our parents are no longer with us, so I am the one to advocate for my sister’s medical needs.”
“My sister Natalie is my entire world. She deals with everything that comes with Down syndrome with so much strength and positivity. Our parents are no longer with us so I’m the one to advocate for my sister’s medical needs. People with Down Syndrome are living longer than ever which is something we should celebrate, but it also means adults like my sister need access to healthcare professionals who understand their unique needs as they grow older. She needs an advocate to help her manage the impact that aging will have on her health. Without me stepping in, it would be hard for any doctor to give her the care she needs right away. I’m really grateful that I get to take care of my sister, it’s brought us closer than ever. But I’d be lying if I said I wasn’t worried about the future. I think most parents and caregivers feel that way.”
Drew, Natalie’s Brother
“What will happen when we are no longer able to be at our daughter’s side?”
“Adulthood for our daughter has brought forth many challenges, such as deteriorating vision and other impacts on the human body. It would be wonderful to have a holistic medical centre with groups of doctors that were focused on care for those with Down syndrome, but this is not a realistic goal at this time. So, we make sure that appointments are made and doctors are aware of all details to provide appropriate care. We know that we will only be able to do so much to provide her with the independence that she deserves, and medical care is a big part of that need. We are grateful to have good health to be able to support her in our senior years, but our time will be limited. What will happen when we are no longer able to be at our daughter’s side?”
Mike and Carol, Mary Anne’s Parents
