Down syndrome is an intellectual disability that occurs when an individual has a full or partial extra copy of chromosome 21, according to the National Down Syndrome Society (NDSS). The Centers for Disease Control and Prevention (CDC) states that approximately one in every 700 babies in the United States is born with Down syndrome and Down syndrome is the most common chromosomal condition. 

In recent years, research is indicating that individuals with Down syndrome have a significantly increased risk of developing dementia, a general term for loss of memory, language, problem-solving, and other cognitive abilities. According to the NDSS, 30% of people with Down syndrome who are in their 50’s have Alzheimer’s (the most common cause of dementia) and approximately 50% of people with Down syndrome in their 60’s have it.  

Potential Symptoms

The Alzheimer’s Association reports that someone with Down syndrome might be experiencing early-onset Alzheimer’s disease if they experience any of the following:

• Reduced interest in being social

• Conversing less than usual

• Decreased enthusiasm for usual activities

• Decline in ability to pay attention

• Sadness, fearfulness, or anxiety

• Irritability, uncooperativeness, or aggression

• Restlessness

• Sleep disturbances

• Seizures

• Changes in coordination and walking

• Increased excitability

Research Involved

Research is ongoing to learn more about why some people with Down syndrome develop dementia and others do not. The National Institute on Aging highlights some specific ways researchers are trying to find out how the disease begins and progresses so that treatment can be created to prevent and/or delay the disease. Research includes: 

• Studies to help our understanding with the biological and genetic causes of brain abnormalities that lead to Alzheimer’s

• Observational research to measure cognitive changes in people over time

• Studies of the biological signs of the disease, brain scans, and other tests that might help to diagnose Alzheimer’s in the very early stages

• Clinical trials to test treatments for dementia in adults with Down syndrome

The Down syndrome community has played a large part in contributing to the studies and research being conducted. Specifically, Frank Stephens, who has Down syndrome, has testified on Capitol Hill about the importance of research in this field. 

Is There Treatment Currently Available?

Currently, there are no drugs to treat dementia in individuals with Down syndrome that are approved by the U.S. Food and Drug Administration. The Alzheimer’s Association mentions that a class of drugs known as cholinesterase inhibitors is approved in the United Kingdom for treatment. However, an analysis of this form of treatment by international experts found that there is not enough evidence to reach a conclusive judgment on whether or not this treatment is effective. Today, there is a push for more clinical studies and continued research to identify treatment options. 

As we celebrate Down Syndrome Awareness this month, we encourage individuals to learn more and support research that is studying the correlation between Down syndrome and Alzheimer’s disease. 

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