March 5, 2024

Dementia up among older people with Down Syndrome

Older people with Down syndrome have higher rates of developing dementia and Alzheimer’s disease, a new study finds.

The study, funded by the National Institutes of Health (NIH) and the Agency for Health Care Research and Quality, examined Medicaid claims among nearly 3,000 enrollees with Down syndrome from 2008 to 2018.

Details of the Study

The researchers, from the University of Wisconsin-Madison, analyzed Medicaid claims specifically in Wisconsin. They found that 18 percent of middle-aged people with the condition, between the ages of 40 to 54, filed dementia claims. People in that age group had a 40 percent chance of filing a dementia claim over the next decade. And as people with Down syndrome grew older past the age 55, the likelihood of filing dementia claims increased to 67 percent.

Lauren Bishop, assistant professor of social work at the University of Wisconsin-Madison who worked on the study, said the goal was to get a full population sample of people with Down syndrome who were using Medicaid services, noting this data is “very meaningful for public health policy.”

“This study gives us a really good, reliable estimate of the extent of the problem of dementia and Down syndrome. Knowing that by age 55, 61 percent of people with Down syndrome will have a clinical diagnosis of dementia, can help state governments plan for services and costs. It tells us we have a real need for services and support so people with Down syndrome can live their best life possible for as long as possible.”

– Lauren Bishop

What’s Down syndrome?

It’s a condition characterized by an extra copy of chromosome 21, which carries a gene that produces the amyloid precursor protein (APP). When too much APP is produced in Down syndrome, there’s an accumulation of beta-amyloid protein plaques in the brain. Beta-amyloid buildup is the hallmark feature of Alzheimer’s disease.

Nearly all people with Down syndrome end up developing these plaques on the brain by age 40.


“Autopsy and neuroimaging studies indicate that by 40, virtually all adults with Down syndrome exhibit Alzheimer’s disease neuropathology,” the authors of the latest study wrote. “However, individuals can live decades with Alzheimer’s disease neuropathology prior to developing clinical symptoms.”

The results “highlight the need to… develop dementia services and supports for adults with Down syndrome as they age and continue to rely on Medicaid and Medicaid-funded assisted living or skilled nursing facilities,” the authors conclude.


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