Down Syndrome, Alzheimer's Disease and Drug Trials

Jo C.

Stunningly; 90% of people with Down Syndrome will develop Alzheimer's Disease, much of the onset being in their 40's and 50's.  Considering the recent disagreement re drug approval, this is an informative link, and in some aspects, heartbreaking.   Well worth reading the entire article:

https://www.yahoo.com/news/people-down-syndrome-longer-life-102915167.html

J.

Michael Ellenbogen

Those folks are the ones that will be inpacted the most by the CMS dession.

Pam14

Jo - Thank you for posting this!  I have not been on here in ages & just popped on to see if you all are having any activity with aging Down Syndrome with Alzheimer's.  If you recall, my sister, Deb, passed away from it in 2017.  I'm now an administrator on a Facebook group which addresses Aging Down Syndrome with Alzheimer's.  We're over 900 members now, many of whom are caregivers.  Here's some up-to-date facts regarding Alzheimer's and aging Down Syndrome:  Alzheimer's usually does not affect Down Syndrome prior to the age of 40.  If someone has a loved one much younger than 40 & is told it's Alzheimer's, it's not.  It's probably regression, which can be curable.  Many physicians are still not well versed in treating Down Syndrome adults.  The medications currently used for dementia in Alzheimer's patients are not found, at this time, to be effective in Down Syndrome patients.  The side effects are supposedly worse than the med.  They are also very likely to get seizures with the Alzheimer's.  Much can be learned about adult Down Syndrome patients by following Dr. Brian Chicoine and the Adult Down Syndrome Center in Chicago.  They have a tremendous on-line library that is very helpful.  They have also treated over 6,000 adults with Down Syndrome.  I wish the Alzheimer's Association would start to include a caregiving site & information for caregivers with Down Syndrome adults with Alzheimer's.  The numbers are growing by the day &, sadly, there still is not enough information out there for the caregivers.

Jo C.

Pam, hello!  It is SO good to hear from you.   Of course I remember you and your dear, sweet sister, Deb.  So many heartfelt dynamics and oh my; what a loving, loving, amazing sister you have been. You did indeed go the long distance and then some.  Many times my eyes were tear filled with what transpired over time.  Deb was awesome; no one quite like her, ever.

It is great that you continue to support communications and support for those who have a LO with Down Syndrome and Alzheimer's.   There is almost zero mention of this on the Message Boards.  I sometimes wonder if some of the people who lurk here to read but do not join and communicate may have a LO with Down and Alz's.  No way to know.

IDEA:  It would be very informative, if you wish to do so and have the time, to start your own independent Thread here on this Forum regarding Down Syndrome and Alz's, AND then as you present your facts and input, let people know of your own special group and how it can be reached for those who find this pertinent to their experience.  It would be lovely for them not to feel alone by finding others who walk the same path and fully understand.

I am glad to hear that Doctor Brian Chicoine in Chicago is still doing his fine work. Do you know if  they continued with their special clinic for Down person's with Alz's?  Way back when, they had such a wonderful dedicated clinic going; it was heartwarming. Don't know if that has been continued if it has been supported financially so it can be up and running.  So much funding has been lost over time for so many due to many different factors. If I am recalling correctly, he has also written a book or two.

Also, if you do put your information in a Thread, then I would like to send it on to the Admin. of this Board.   they can then pass the information onto the Assn. Social Workers who are called Care Consultants who are available 24/7 by dialing the (800) 272-3900 number and asking for a Care Consultant.  There is no fee for this.  The Consultants can then add your information to their lists of helpful entities. If someone calls in with such an issue, then there is more information to provide.

Really, it is so good to hear from you; keep up the good work; somewhere Deb is smiling at her good and loving sister who continues on bringing much needed support to others,  As said, you are amazing!

J.