18-07-2025
Supporting Older Adults With Intellectual Disabilities: A Growing Imperative For Leaders
Karen Fonseth is Chief Executive Officer of DASCH Inc., one of Canada's largest nonprofit organizations.
People with intellectual disabilities, such as those with Down syndrome or fetal alcohol spectrum disorder, have historically had shorter life expectancies than the general population, but data from a Population Reference Bureau study found that the gap is shrinking. Thanks to improved medical care and early diagnoses, the study shows that between 2008 and 2017, the lifespan gap between adults with intellectual and developmental disabilities and those without narrowed by about two years.
Because of this amazing shift in life expectancy, the number of adults with intellectual disabilities is rising. Now, anyone who lives a longer life is more susceptible to common aging issues like dementia, mobility loss, chronic illness and social isolation. But for folks with intellectual disability, that complexity can multiply.
A 2022 Canadian survey reported that more than 27% of adults have a disability, and adults aged 50 to 64 with intellectual disabilities have higher rates of conditions like sarcopenia and low bone density. That means early intervention and aging‑friendly planning cannot wait.
Why Leaders Must Act Now
The stakes are high for organizations supporting this population. When parents age or pass away, the absence of a formal care plan can trigger crisis placements in ill‑prepared nursing homes or hospitals. Recruitment struggles and staff burnout intensify without sufficient training to reinforce continuity.
Leaders must challenge the disability support sector to redesign models so they are aging‑ready and rooted in both intellectual disability expertise and geriatric best practices.
To meet this need, DASCH partners with the National Task Group on Intellectual Disabilities and Dementia Practices (NTG). Their training framework, adopted across Canada and the U.S., focuses on dementia recognition, consistent staffing strategies and family engagement.
Staff are trained to understand nonverbal cues, manage challenging behaviors and provide consistent care. On average, a person with an intellectual disability will interact with 500 to 600 different support staff throughout their life—a level of churn that deeply erodes trust and continuity.
Without an intentional focus on aging and well-trained support staff, adults with intellectual disabilities risk being overlooked at the very moment they need the most support.
What Disability Support Leaders Can Do Today
1. Invest in dementia‑specific training. Partner with trusted experts like NTG to equip staff and families with early detection and response skills.
2. Prioritize staff retention and consistency. Spend time and attention on onboarding and training. Hold refresher sessions at regular intervals.
3. Create integrated adult‑day and residential programs. Promoting social connection and services like nutrition, therapy, and literacy enhances quality of life and may reduce chronic illness progression.
4. Plan ahead with families. Encourage families to engage early in estate and guardianship planning. Have a clear housing strategy to avoid crisis transitions.
5. Advocate for funding that values longevity. Support public policy that recognizes the higher needs of aging adults with intellectual disabilities and that reimburses care aligned with best practices.
Dignity Through Every Stage Of Life
The shift in conversation is unmistakable. Two decades ago, dementia among people with intellectual disabilities was dismissed as part of their condition. Not anymore. A growing body of research and evolving support models prove informed support raises quality of life and safeguards dignity.
Leaders in the disability support sector have an obligation to evolve from reactive crisis interventions to proactive, full-lifespan support, enabling people to age in place. At DASCH, we believe the people we serve deserve nothing less than care that honors their whole life story. We owe it to them and their families to build systems rooted in dignity, respect and continuity.
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