December 3, 2025
How research is improving the lives of people with intellectual and developmental disabilities as they age.
What if someone you love who lives with an intellectual disability began losing their memory, their speech, their ability to continue living independently—and no one suspected it might be dementia or truly understood how to help?
Until a made-in-Manitoba study by St.Amant researchers, led by Dr. Shahin Shooshtari, no one knew that adults with intellectual and developmental disabilities (IDD) can receive a dementia diagnosis as much as12 years earlier than those without intellectual and developmental disabilities.
Just as startling, they also found that younger adults (24 – 54) with IDD are four times more likely to be diagnosed with dementia than those without an IDD – and those over 54 are five times more likely.
For the first time, Dr. Shooshtari and her team had revealed how much more aggressively and earlier dementia targets those living with intellectual and developmental disabilities in Manitoba.
Every earlier diagnosis means more time for life-changing decisions that can mean everything for a loved one and their family, including preparing them to age comfortably in their own home; that’s why we need your help.
“Early detection can allow a loved one to make lifestyle changes and decisions about critical treatments that may delay its progression or deal with underlying risks,” Dr. Shooshtari explains. “And understanding the risk factors and characteristics helps us provide better support and potentially prevent or delay dementia onset. Early detection is key.”
Early detection made all the difference for Claudette, a person who was supported in her home by St.Amant until her passing in 2023.
“Claudette was strong, determined, and clear about the care she expected. She was highly sensitive to change, and not being able to age in her home would have been deeply detrimental to her well-being.” – Keanna, one of Claudette’s supporting team members.
With your support we’re changing the way aging and dementia impact people and families living with intellectual and developmental disabilities. Please support St.Amant’s ongoing research with your gift TODAY.
Sadly, the default response to a dementia diagnosis for many people with intellectual and developmental disabilities is to place them in extended-care facilities. Dr. Shooshtari’s research showed that about one-third of adults with IDD who had dementia were living in long-term care facilities such as Personal Care Homes. This ‘solution’ does nothing to address psychological and emotional distress, loss of familiar surroundings and independence, and creates significant safety and quality-of-care concerns.
The research being done here has made St.Amant a leader in developing strategies and practices for personalized, aging-at-home and community-based living options that put those wishes front and centre; improving the quality of life for individuals and families receiving this difficult-to-hear diagnosis.
For St.Amant’s front-line staff working with Claudette, it meant being able to collaborate with everyone involved in her life to ensure she could continue living where she felt safest and most supported. Working together led to updates like removing mirrors, changing paint colours, and adjusting lighting to make Claudette’s home a safer and more calming environment.
Early detection has allowed us to put meaningful preventive supports in place, giving us time to plan and to help more people age at home with dignity.
“Claudette’s experience opened the door for others to follow in her footsteps,” says Keanna. “We now have processes and planning in place to better support individuals, including preventive measures that help us identify and address potential challenges early. Her legacy lives on in the systems we have built, the stories we share, and the work we continue to do.”
Your support for St.Amant researchers like Dr. Shooshtari and her team is critical to overcoming the complex challenges facing our aging population, and all people living with dementia and intellectual and developmental disabilities.
Please make your donation now to help ensure ALL our loved ones are able to grow older with dignity, belonging, and full participation in their home community.
With Gratitude
Tania Douglas,
Executive Director
PS. Make your donation today by mail or online to help us continue this important research and other priorities at St.Amant.