Another of those pesky statistics that he mentioned was that between 50% and 70% of people who have Ds will develop dementia in adulthood.
That is huge!
Dr. Potter did a fantastic job describing the main issues and progress that has been made in this area with simple terms that even someone who is predominantly right-brained (and maybe a little allergic to numbers and science) can understand.
Here’s a brief summary of what I learned today:
Why is there a link between Down syndrome and Alzheimer's disease?
- Research has found that there is a protein on the 21st chromosome that is linked to the ‘plaque’ in the brain that is one of the causes of Alzheimer's disease. Because people with Ds have three copies of this in every cell instead of two (T21), they are more likely to develop Alzheimer's disease.
- People who don’t have Ds but do have Alzheimer's disease end up with some cells that have T21.
- The ‘plaque’ or amyloid deposits in the brain progress faster because of the T21 and therefore people with Ds get Alzheimer's disease sooner, sometimes 20-30 years sooner.
In other words, the key “Alzheimer gene” is on the 21st chromosome.
What is currently being done?
- Dr. Potter and others believe that studying the link between Ds and Alzheimer's disease will provide answers on how to slow and eventually cure all Alzheimer's disease.
- Collaboration between the Linda Crnic Insititute for Down Syndrome and Dr. Potter’s newly established Alzheimer’s Center will examine links between the two diagnoses in patients located in the Denver/Boulder area.
- The Global Down Syndrome Foundation, the Alzheimer's Association, and the Linda Crnic Institute for Down Syndrome have awarded $1.2 million in research grants to five scientists (in CA, KY, SC, and Israel) for innovative investigations that explore the development of Alzheimer's disease in individuals with Down syndrome.
Research in this field is the key to helping a huge number of people, especially baby boomers and people with Down syndrome who are living longer. Without answers we are facing a serious healthcare crisis.
What can we do now?
Spread the word – more people need to realize the impact that Alzheimer's disease is going to have on our country in the near future and get involved in finding answers now.
Help increase research funding – answers will only come from research. Research only happens when it is funded, either by the government or private entities.
Exercise and stimulate the brain – Dr. Potter reminded us that “what’s good for the heart is good for the brain.” Heart health including cholesterol levels and especially exercise can slow the progression of Alzheimer's disease.
Participate in research – those of us who are caregivers of adults who happen to have Ds need to consider supporting our loved ones as they volunteer for research studies. According to Dr. Potter, they start accepting participants around the age of 30.
Find out more – Dr. Potter will be sharing more primary data with Gail so that those who are interested can learn more about the current research and where it is headed. Information is also available on the Global Down Syndrome Foundation website.
As a parent, I was struck by the thought that Ds is mainly getting attention from researchers because of its relationship to other conditions. Dr. Potter talked about how little Ds research is actually funded.
From the GDSF website:
Down syndrome is the least funded major genetic condition by our National Institutes of Health (NIH) despite being the most frequent chromosomal disorder (1 in every 691 babies in the US is born with Down syndrome). The funding for research benefitting people with Down syndrome at the NIH started a continual and precipitous decline in the year 2001.
Even compared to other intellectual and developmental disabilities or comorbidities, Down syndrome has been funded anywhere between 3x and 11x less on a per capita basis year on year.
We are seeing however, this research with the link between Ds and Alzheimer's and research currently being conducted that looks at why people who have Ds tend not to get solid tumors. Call me skeptical, and I’m not in any way saying that the research shouldn’t be done, but as a parent, I have to say it looks like it’s okay to fund research on Ds only when it can help people who don't have the syndrome in addition to helping those who do. (Granted, I'm not one who thinks we need to find a "cure" for Ds, but certainly some of the other reasons presented by GDSF on their page entitled "Why Research is important" are valid, in and of themselves.)
Also, I was somewhat relieved to hear Dr. Potter say that the increased risk for early-onset Alzheimer's disease in mothers who give birth to their child who has Ds before they are 35 has not been fully researched. I was under the impression that I was five times more likely to develop Alzheimer's disease myself while caring for my adult son.
In all, the interview was extremely informative and I am so glad that I listened. This is a topic that is important to all of us. I’ll be the first to say that I was afraid of what I’d hear, and that not all of the news is good. But the only way to combat an issue like this is with knowledge.
As I'm getting to know Gail, I could hear the wheels turning as she asked questions with action oriented emphasis. I look forward to finding out what she has up her sleeve to help advance this cause that is near and dear to me and millions of others.
Thank you Gail Zahtz and Dr. Huntington Potter for sharing and educating us!
You can listen to the full interview on Gail’s BlogTalkRadio page and be sure to follow her all this week on Demand Design.