Care Instructions from CDSS

Medical advancements and increased quality of life are helping people with Down syndrome live longer.

As many will now outlive their parents, more siblings than ever are choosing to become caregivers.

But they canโ€™t do it alone.

Sometimes referred to as “forgotten caregivers”, sibling caregivers lack access to the networks and resources they need to confidently step into their new role.

Your support will help us fill the resource gap and support a new generation of caregivers.

Sibling Caregivers Can’t Do it Alone

Canada’s aging population and the increased life expectancy of Canadians with Down syndrome are creating a growing urgency. We cannot expect sibling caregivers to take on this responsibility alone. Caregivers already contribute immensely, alleviating billions of dollars from our healthcare system annually.

We need to develop the programs and networks that the next generation of caregivers need to give Canadians with Down syndrome proper support and the chance to thrive in their adult and senior years.


of adults with intellectual disabilities rely on their families as their main source of support.

Canada Housing and Mortgage Corporation

$5.7 Billion

unpaid hours are spent caregiving every year in Canada.

The Canadian Centre for Caregiving Excellence


of Canadians will be a caregiver at some point in their lives.

Rexall Care Network

Parents can only donate their experience.

For everything else sibling caregivers need you.

Parents are sharing their care instructions for their children who will one day become sibling caregivers.

Show your support for sibling caregivers by sharing your own Care Instructions on social media with #CDSSCareInstructions.

Share Your Care Instructions

Add your own care instructions to our community collection and help sibling caregivers as they prepare to take on their new role and responsibilities.ย 

Share Care Instructions

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By submitting, you are giving CDSS permission to share your care instructions through social media, email, and other channels of communication.
5 entries.
Andrew from London, Ontario wrote on November 17, 2023
Matthew has always been a Leafs fan. Every year for his birthday we make the trip to Toronto to watch a game and have dinner with friends. I hope that's something that continues with his brother and sister-in-law when we're gone.
Laura from Collingwood wrote on November 17, 2023
He needs extra wake-up reminders to be in time for work!
Monica from Edmonton, Alberta wrote on November 17, 2023
I know you're busy, I know people need you. But you can't pour from an empty cup, my friend. Take care.
Laura wrote on October 24, 2023
An important part of Ruthyโ€™s caregiving plan was set out in our mother's will, which clearly stated that I would be Ruthyโ€™s caregiver and that my husband would care for Ruthy should anything happen to me. It was essential that these roles were clearly identified because our brother, who lives in Mexico, did not want to be involved in Ruthyโ€™s care and the family wanted to ensure that Ruthy would always remain with us. We recommend you consider these kinds of legal precautions and review them with your children.
Vanessa wrote on October 24, 2023
Although caring for my sister has been difficult at times, I have found a balance between Marriahโ€™s needs and my own. I realized that I could still pursue the things I wanted in life, it just might look a bit different than it might for others my age. I let caregiving become part of my life and it helped me to shift my perspective. Marriah became one of my best friends. I wouldnโ€™t change it.

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