My Cousin, Stacy

By Lori Stanton, Alzheimer’s Association Regional Manager

Growing up, there were four of us.

It never mattered that we didn’t all have the same Mom and Dad; as cousins, we were blood, and that was all we needed. In the earliest years, we didn’t even realize that one of us was a little different than the other three—aside from the obvious, one boy and three girls.

We sang songs, and swung on the swings. We made mud pies and forts and ate honeysuckle off the vine. I was seven or so, when we were outside my cousin’s house and a neighborhood boy rode by and yelled the word, “Retard!” I had to ask my Dad what the word meant.

Understanding Down syndrome.

My cousin, Stacy, was born with Down syndrome. Down syndrome is a genetic disorder caused when abnormal cell division results in extra genetic material from chromosome 21. Down syndrome nearly always affects learning, language and memory, but its impact varies from person to person. As we grew older, Stacy’s growth halted, both physically and cognitively.

While Stacy can do many things on her own, she is primarily non-verbal and mostly deaf. This compounds communication difficulties, and now that Stacy is in her late 40s, makes deciphering miscommunication vs. memory issues difficult.

As they age, individuals affected by Down syndrome have a greatly increased risk of developing a type of dementia that’s either the same as or very similar to Alzheimer’s disease. Autopsy studies show that by age 40, the brains of almost all individuals with Down syndrome have significant levels of beta-amyloid plaques and tau tangles, abnormal protein deposits considered Alzheimer’s hallmarks. As a family, we have had many discussions of how will we know if/when Stacy starts showing signs of Alzheimer’s disease?

The fight to end Alzheimer’s includes people like Stacy.

As our medical abilities have increased over the years, as has our ability to keep bodies alive longer. People with Down syndrome did not used to live as long as they do now. As with all adults, advancing age also increases the chances a person with Down syndrome will develop Alzheimer’s disease.

According to the National Down Syndrome Society, about 30% of people with Down syndrome who are in their 50s have Alzheimer’s dementia. About 50% of people with Down syndrome in their 60s have Alzheimer’s dementia.  In the scope of things, interacting with Down syndrome and Alzheimer’s is relatively new.

Right now, the best thing we can do for Stacy is to raise awareness. Many people are unaware of the correlation between Down syndrome and Alzheimer’s disease. The more advocacy we can do, the more awareness we can raise, the more research can be done to help not only those with Down syndrome and Alzheimer’s, but any other form of dementia as well.

Help is available.

National Down Syndrome Society (NDSS) is a nonprofit organization that offers information and support to individuals with Down syndrome and their families. Call NDSS at 800.221.4602 or view their Aging and Down Syndrome: A Health & Well-Being Guidebook online.

The National Association for Down Syndrome (NADS) educates the public and offers information and support to people living with Down syndrome and their families.

A nonprofit dedicated to improving the lives of people with Down syndrome, the Global Down Syndrome Foundation supports the Linda Crnic Institute for Down Syndrome, which focuses on research and medical care for those with Down syndrome.

The National Down Syndrome Congress (NDSC) raises awareness and advocates for those impacted by Down syndrome.

The Alzheimer’s Association can help you learn more about Alzheimer’s disease and other dementias, and help you find local support services. Call our 24/7 Helpline at 800.272.3900.

3 thoughts on “My Cousin, Stacy

  1. Thank you so much for sharing this story. I did not know about the connection between Down syndrome and Alzheimer’s disease. It gives us all another powerful reason to push forward for a cure.

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