Down syndrome and Alzheimer's Disease

Down syndrome and Alzheimer's Disease

June is Alzheimer’s and Brain Awareness Month and No Bags To Check is going purple with an Alzheimer’s Awareness series dedicated to this important cause and the Alzheimer’s Association’s The Longest Day event on June 21st. 

Imagine being a new mother in the 1960s and early 1970s. You’ve just given birth and are so excited to meet your new son or daughter when the doctor, with a worrying face tells you “Your baby has Down syndrome.”

Then comes the stream of medical appointments and professional consultations- much of them coming to the same conclusion- your child will never have a "normal life" and will never be a contributing member of society. Some, probably most, tell you the best option is to put them in an institution. At this point there are virtually no schools for children with Down syndrome (DS) or other special needs and very little support to be offered for your family. What would you do?

Many families did make the heart-wrenching decision to place their children in institutionalized care while others had their children remain at home and forged ahead trying to create opportunities in a decidedly unwelcome environment. Fast forward 50 years or so and the world, including the world of DS, has dramatically changed.

Advances in medicine has dramatically increased the life expectancy for people with DS. The National Down Syndrome Society reports that life expectancy has increased from  25 years in 1983 to 60 years today. And while we still have a long way to go as becoming a country that values inclusion regardless of appearance or ability, there are many more educational, work, recreational, and social opportunities for people with DS and other disabilities that there were in the 1960s. Those babies born in the 1960s and 70s have grown into meaningful contributors to their communities and active participants in their own lives.

But we're realizing that with the increased longevity for people with DS comes a price. Families who have pushed and advocated for years for support and equality for their loved ones are now facing a new and often unexpected hurdle. Older adults with DS, who have often surpassed every expectation ever placed on them and defied what they were labeled as children, are now faced with yet another challenge.

People with DS have a much higher risk of developing Alzheimer's than the general population, and they typically develop it at an earlier age. The Alzheimer's Association reports that nearly all adults with DS have the brain changes associated with Alzheimer's by age 40. While not all people with DS will then show the behavioral symptoms of the disease, about 75% of people with DS will by the time they turn 65. While there's still much left unknown about the genetics of it all, scientists believe that the extra chromosome 21 that causes DS also impacts the development of Alzheimer's. Better understanding this link has helped further research into better understanding and treating of Alzheimer's.

But there's still so much to be done for the 400,000 adults with DS in the US, their families, and their communities. We've made great strides since the 1960s, but can't leave these people without the support and care they need now.

To support the Alzheimer's Association, the world's leading organization in Alzheimer's care, support, and research, and The Longest Day event, click here. If you'd like to donate to my personal page for The Longest Day (thanks!!!), click here. Your support matters.

Wait a minute- isn't this usually a travel blog? You're right, but for the next three weeks I'm dedicating my little internet real estate to this cause that is near and dear to my heart. I hope it encourages people to share information, stories, and support. Be sure to subscribe to the blog so you don't miss a post and you can also follow on FacebookTwitter, and Pinterest.

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Filed under: Alzheimer's

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