• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

I have a 28-year-old daughter who has Down Syndrome and Alzheimer's.

ctdsara

Registered User
Sep 3, 2015
1
My daughter was 23-years old when we noticed the 'changes'. We took her to Johns Hopkins to the Kennedy Krieger Institute and were interviewed. At the time, we were told it was possibly dementia or possibly depression. Over the past few years we were told she was too young for it to be dementia and she must be depressed. Our daughter used to be very outgoing, read at a first or second grade level and would always get compliments about what a good dancer she was. Even though it is not unusual for someone who has Down Syndrome to have Alzheimer's in the forties, 23 was very unusual but a CT brain scan in June confirmed what we had known for five years. I'm very interested to hear if anyone else knows someone who has been diagnosed at such a young age. It has progressed considerably in the past eight months.
 

Saffie

Registered User
Mar 26, 2011
22,506
Near Southampton
Hello and welcome to TP.
I am so very sorry to hear about your daughter. She is indeed very young to be suffering this at such a young age although I, too, know that it is not that unusual for someone with DS to have this in their forties though of course, not everyone with DS does so.
I don't have personal experience of this but have a grandsonof 17 with DS so I can imagine how very distressing this is for you.
I hope someone will come along who can can help you more. x
 

Lindy50

Registered User
Dec 11, 2013
5,239
Cotswolds
Hello ctdsara and welcome to TP :)

I'm afraid I have no personal experience to share with you, and can only imagine how distressing this is for you and your daughter. I hope someone comes along soon who can be more helpful than I can. In the meantime, I just want to say hi and welcome. Please feel free to post away :)

Lindy xx
 

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