Canadian Down Syndrome Society Asks Parents to Write 'Care Instructions' for Next Generation of Caregivers

Medical advances have seen the life expectancy for Canadians with Down syndrome more than double over the past 40 years. The average life expectancy has risen to over age 60 today, up from 25 years of age in 1983.

Many people with Down syndrome are now beginning to outlive their parents, and the responsibility for caregiving is increasingly being passed on to siblings. As their primary caregivers, parents often carry the knowledge about how to care for those with Down syndrome, creating a significant information gap when siblings take over. In a 2021 survey of sibling caregivers, 20% lived with their sibling with a disability, 41% anticipated living with them in the future, and 89% said they had a supporting role in their siblings’ lives.

As part of Canadian Down Syndrome Week (Oct. 22–28th), the Canadian Down Syndrome Society (CDSS) has launched an awareness and fundraising campaign called 'Care Instructions.'

The campaign, created by FCB Canada, consists of a series of videos in which ageing parents offer heartfelt words of encouragement and advice to future sibling caregivers who might be unprepared for the magnitude of the task awaiting them. The videos direct to the CDSS website for more information and to make a donation. 

“We wanted to capture the reality that families are now facing,” said Laura LaChance, executive director of the Canadian Down Syndrome Society. “The reality of a longer life means more siblings may need to fill the shoes of their parents as primary caregivers, and don’t feel properly equipped with the support and resources they need. Through this campaign we are showcasing the emotions that families are dealing with to compel people to donate, so that CDSS can help address the issue.”

As they age, people with Down syndrome are at increased risk for chronic health conditions like Alzheimer’s disease. Sibling caregivers are in urgent need of the necessary resources and information to provide a well-informed system of care for their loved one as their needs evolve. 

There's also an additional social video, Bibi.

The videos are appearing online as well as on CDSS social channels. They are being supported by digital display, OOH, email outreach, and a direct mail component.

“No one appreciates more what lies ahead for sibling caregivers than their parents,” said Andrew MacPhee, executive creative director of FCB Toronto. ”To help our audience fully understand the weight of their responsibilities and drive donations, we needed to hear the raw and vulnerable truth directly from the source.”