January 13, 2025

Understanding Dementia in Adults with Intellectual and Developmental Disabilities
Dementia research in adults with intellectual and developmental disabilities (IDD) is critical for improving care and support. Marcel Fisette, Manager of Corporate Communications at St.Amant, had the opportunity to interview Dr. Shahin Shooshtari, a professor at the University of Manitoba and Senior Researcher at the St.Amant Research Centre, about her important work in this field.
How It All Started
MF: What led you to study dementia in persons with IDD?
Dr. Shooshtari: I started with degrees in Public Health Sciences in Iran and completed my Ph.D. in Community Health Sciences at the University of Manitoba. My post-doctoral training in aging and disability, funded by the Manitoba Medical Services Foundation, sparked my interest. Since joining the University of Manitoba and St.Amant in 2006, I’ve focused on research into the health and well-being of people with IDD, including their cognitive functioning.
MF: How did your work with the St.Amant Research Centre begin?
Dr. Shooshtari: My position was jointly funded by St.Amant and the University of Manitoba, which has been instrumental. St.Amant has supported my research, fostering collaboration with policymakers, clinicians, families, and people with IDD. They’ve also helped disseminate and mobilize our findings, which is crucial for real-world impact.
What the Research Shows
MF: Can you summarize your findings on dementia prevalence in Manitobans with IDD?
Dr. Shooshtari: We used provincial health data to compare dementia rates in adults with and without IDD. Among younger adults (ages 25-54) with IDD, nearly 5% had a history of dementia, which is four times higher than their peers without IDD. For older adults (55+), the rate was 13.8%, nearly five times higher. This underscores the increased dementia risk in people with IDD, which has significant implications for care and support planning.
MF: What did you learn about the living situations of individuals with IDD and dementia?
Dr. Shooshtari: Adults with IDD and dementia were, on average, 12 years younger at diagnosis than those without IDD. About 35% lived in long-term care facilities, and younger adults with Fetal Alcohol Spectrum Disorders had the highest dementia rates, while older adults with Down Syndrome were most affected. These findings highlight gaps in support for younger individuals who may not qualify for traditional dementia services aimed at those 65 and older.
MF: What about your research into autism and dementia?
Dr. Shooshtari: As part of an international team, we reviewed links between autism and dementia. While no conclusive evidence shows an increased dementia risk for autistic individuals, the review explores possible genetic and environmental factors.
Why This Work Matters
MF: Why is it crucial to explore dementia in persons with IDD?
Dr. Shooshtari: Understanding the risk factors and characteristics helps us provide better support and potentially prevent or delay dementia onset. Early detection is key.
MF: How does your research address knowledge gaps?
Dr. Shooshtari: Before our work, there was limited data on IDD and dementia in Canada. Our studies have filled gaps by examining prevalence, living conditions, and access to care in Manitoba and beyond. This has informed policies like Manitoba’s Seniors Strategy and Canada’s Dementia Strategy.
What It Means for Families and Communities
MF: Why should the wider community care about this research?
Dr. Shooshtari: People with IDD make up 1% of Manitoba’s population, many requiring lifelong support. Dementia adds another layer of complexity, and awareness is vital for caregivers, policymakers, and healthcare providers to offer appropriate care.
MF: What tools can help address dementia in this population?
Dr. Shooshtari: The National Task Group Early Detection Screen for Dementia is a simple tool families and caregivers can use to monitor early signs. It’s freely available and helps guide care planning[KW1] .
Looking Ahead
MF: What are your future research priorities?
Dr. Shooshtari: We’re examining dementia risks for individuals with IDD beyond Down Syndrome and studying healthcare access. We’re also offering courses on brain health and evaluating the use of the NTG-Early Detection Screen for Dementia in collaboration with other provinces.
MF: How can organizations like St.Amant support your work?
Dr. Shooshtari: Funding is always essential, but so is fostering a culture of inclusive research. Supporting staff and participants in approved projects helps us generate meaningful results.
MF: Any final thoughts?
Dr. Shooshtari: As individuals with IDD live longer, they need continuous support to age well. Inclusive dementia research is essential to improving their quality of life and enabling them to stay connected to their communities.
Wrapping Up
MF: Thank you, Dr. Shooshtari, for sharing your insights and highlighting the importance of inclusive dementia research. Your work is helping to shape more supportive communities for people with IDD, especially as they age.
Understanding dementia in persons with IDD is a growing priority as people live longer and face complex health challenges. Research like Dr. Shooshtari’s is critical to ensuring that this vulnerable population has access to appropriate care, early detection tools, and tailored support. By raising awareness and addressing these gaps, we can improve the quality of life for individuals with IDD and ensure they continue to feel connected, valued, and supported throughout their lives.