Dr. Shahin Shoostari

Dr. Shahin Shoostari’s research focuses on people living with intellectual and developmental disabilities and how they are affected by Alzheimer’s disease and dementia.

Recently, she completed a study using linked health and social services administrative data accessed through the Manitoba Centre for Health Policy (MCHP) and found that the dementia rates in people living with intellectual and developmental disabilities are much higher. “It’s four times higher in the 20 to 54 year age group and up to five times as high in people 55 plus,” says Dr. Shoostari.

She stresses that these numbers aren’t completely conclusive as the results are determined by analyzing the diagnostic codes for dementia in administrative data sets. “Dementia wasn’t necessarily diagnosed but the codes for dementia shows up on the medical records.”

Dr. Shoostari takes this evidence and compares it to people living in the same area who are of the same age and sex as those who weren’t affected by intellectual or developmental disability and found the prevalence much higher in the people with the disability.

She says that currently there is no specialized geriatric assessment, or diagnostic services for persons with these types of disabilities in Manitoba.  In some cases dementia happens earlier to people with these disabilities, especially those with Down Syndrome and that those under the age of 65 do not qualify for the diagnostic and support services that are available for older people.

Another problem is that presentation and symptoms of dementia are usually different in persons with intellectual and developmental disabilities and often times these symptoms are overlooked by caregivers, family and friends. “During their life course, sometimes people with disabilities are supported by multiple organizations and end up getting lost in the shuffle.”

This makes it even more difficult to diagnose dementia. Right now there isn’t a place for these individuals to go for any kind of standardized assessment.  Dr. Shoostari asks, “Should we start comprehensive health assessments and regular screening for dementia in persons with intellectual and developmental disabilities?”

The conversation has been started about having a resource centre that specializes in screening and health assessment for people with intellectual and developmental disabilities.

“It’s important to watch their health over time,” she says.

Dr. Shoostari will continue to analyze the existing data and collect new information on persons with intellectual and developmental disabilities from different sources including family members, caregivers who are dealing with this situation.

“Once we start organizing these conversations with families, clinicians, and other care providers, we can help manage health and well-being of these people more effectively.”


Back to Manitoba Research