'we deserve care' campaign: closing the care gap for adults with down syndrome
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adults with down syndrome experience what is referred to as accelerated aging, making them at risk for developing common medical conditions that typically occur in people over the age of 60.
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for a long time, down syndrome was considered a pediatric syndrome, due to the average life expectancy rate of 25 years, a number determined in 1983. flash forward to today, and the life expectancy of people with down syndrome has grown substantially to an average of 60 years, likely due to improved pediatric interventions and care that have reduced complications significantly.
this new level of healthcare has altered the lives of people with down syndrome for the better. however, the care provided to adults with down syndrome has yet to see the same improvements.
“it’s a new frontier. it’s a new space,” said laura lachance, executive director of the canadian down syndrome society (cdss). “they didn’t live into old age. they weren’t faced with some of the typical aging issues that the general population anticipates. but within the down syndrome population, it often starts 20 years sooner than it might in the general population.”
medical professionals are unprepared to offer care to people with down syndrome, as evidenced by a self-reported survey among health professionals, and it shows in the care that’s being provided.
“healthcare professionals … reported to us that they felt that they didn’t have adequate ongoing training or confidence to provide care for the aging population,” said lachance.
in the survey and according to lachance’s experiences with caregivers, there’s a lack of support, navigation help, education and specialized training that often leads to caregivers having to “educate healthcare professionals” as opposed to the other way around.
the cdss has now launched a campaign, aptly titled “we deserve care,” to help shed light on this significant gap in care provided to people with down syndrome, and to raise funds for the national down syndrome accredited course for healthcare professionals, a course designed to provide down syndrome-specific training for medical professionals so they can be informed and confident when they work with patients.
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“it will be accredited,” said lachance. “we know that folks have to maintain certain credits to maintain their license, so we’re hoping that it would appeal to them.”
down syndrome age-related health concerns
now that people with down syndrome are living into older adulthood, issues that any other older adult may run into are now a risk. for example, adults with down syndrome experience what is referred to as accelerated aging, making them at risk for developing common medical conditions that typically occur in people over the age of 60, including hearing and vision loss, osteoarthritis, osteoporosis, alzheimer’s disease and dementia.
this process of accelerated aging is to be the focus of the new course, because, as it stands now, the level of care that can be provided for people with down syndrome who may develop these conditions is nowhere near where it should be.
“we’re looking specifically for earlier than typical onset dementia. we’re looking particularly at some of the mental health challenges. we’re looking in particular at the aging decline that might happen at an earlier age, and how is it that an individual who goes to the doctor or who goes to a community clinic can be properly looked after?” said lachance.
the course will also provide medical providers with more insight into the independent health concerns that people with down syndrome can develop, allowing them to stay away from “diagnostic overshadowing,” which is when medical providers fail to look into complaints because a person has down syndrome, believing that it must all come back to that.
“i would like to think that every practitioner uncovers every rock, checks for everything, but sometimes in these days of busy practice, and if it’s something that they’re not familiar with, we have heard tales of families being told no, we’re not going to do that test. we won’t bother investigating that because he has down syndrome,” said lachance.
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fostering inclusion through accreditation
care in early childhood often revolves around longevity, with quality of life still in the mix but often taking a backseat to focus on complications and issues that are more severe or life-threatening in nature.
but with life expectancy rates being the best they’ve ever been, ensuring that people with down syndrome can thrive for their entire lives is finally able to take its spot next to longevity in the front seat.
“they’ll live well supported and their caregiver will have confidence that they’re not overlooking anything that is specific to their decline in addition to their diagnosis of down syndrome,” said lachance.
because people living with down syndrome thrive for much longer when they have adequate care, leaving out adulthood is a harmful practice that the cdss aims to change. the fundraising campaign hopes to raise enough money to launch the program in early 2026 so that the future of down syndrome care can catch up to meet the needs the community has today.
“we really just want canadians with down syndrome to access the same level of informed, compassionate care that all canadians do,” said lachance.
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