My daughter with Down's syndrome and dementia

[jilljay]

My daughter ,who has Down's syndrome and other problems, has recently been diagnosed with dementia too.We thought seven years ago that she was sliding into dementia,but because of all the other problems related to Downs,e,g depression ,mental illness etc ...they had to be eliminated before a diagnosis was made!
She was only 32 yrs old at onset and now is 39yrs old ( monday!)
How can the Alzheimers society help us? Have you a special section that deals with L/D?
We have made a fairly large number of phone calls to the A .S. ,but it seems that severe learning disability does not 'belong' in your society!Though certainly the people i have spoken to appear willing to give info and are very pleasant.
Can you please clarify this?
We have been told that 'the working age dementia group is NOT for people like her!
We are SO isolated!!

 

[Brucie]

Hello jilljay

we none of us here can speak for the Alzheimer's Society as we are at most carers who happen to be members - not employees or spokespeople.

I assume you have called the national Help line already, rather than your local branch? If not, then that is what I would suggest.

I can't say much more than to welcome you here. We all have different circumstances, and we all learn from those of others. We try and help by suggesting things that may have worked for us, or not, as the case may be.

Generally speaking, care for younger people with dementia is difficult to obtain. I can't imagine the situation where there are other factors as well.

Best wishes

 

[MandyW]

Hi Jilljay,

My Mum was only 48 when we first saw the signs that something wasn't right with her day to day life, it took years for my mum to be diagnosed and they still dont know what type of dementia she has got (8 years on) as Mum isn't following a specific pattern (if there is one) so it isn't only your daughter's diagnosis that has been drawn out-I think that you'll find that on this forum that most diagnosis' take a while.
I have drawn great strength from TP (Talking point) and I hope that it can help you too, even if we cant always understand your specifics sometimes it's just nice to vent your frustration and have people listen to your rants...a bit like this one!!!

Take cre of yourself,

MandyW

 

[Amy]

Hiya Jilljay,
Welcome to TP. We are all in our own unique positions on here, but the thing that we have in common is that we love and in some way care for a person with dementia. We gleen information, we give and receive support, everyone is welcome. I hope that you will find that TP makes you feel less isolated.
Love,
Helen

 

[jilljay]

Thanks

Many thanks for your quick and thoughtful replies Bruce, Mandy and Helene,much appreciated!!
Although we have been going down this path for seven years now,have never come across anyone in our position ,yet they must be out there!!
I am trying to find other carers who are 24/7 caring for someone young with a learning disability and dementia! Hopefully to get information as to what help they receive, and their opinions!
My opinion of any form of carer is that they are creme de la creme!! I know we are all different and yet the same in so many ways!!
Thanks once again Bruce ,Mandy and Helene!

As I am new and being selfcentred at the moment, my concerns do go out to you all in your caring rolls too.
Will follow this board with great interest and hopefully learn a lot!!

 

[DaisyG]

Hello....

Dear jilljay,

WELCOME !!


I've just done a 'google' search for you...

Type in 'downs syndrome and dementia', and it will give you loads of info.
Some of it I HOPE will be useful.

It looks like the first few web pages it found are a bit on the 'techy' side.. and more useful to a doctor / practitioner / etc ....

Some of the pages looked interesting .... a lot of them are US based sites... but any information will be better than none at all.


I'll keep doing a search to see if I can come up with something a little easier to read ... a lot of the web pages are full of 'waffle' .... and not necessarily written for 'easy reading'...


Take Care

DaisyG

 

[DaisyG]

Hello again

Hi again,


Just found a site...


www.findarticles.com


When you get to the 'opening' page
(ignore the annoying pop up that tells you you have won a TV!!)


Type in 'downs syndrome and dementia' in the 'articles search box'....

It gives you quite a few 'specific pages' that are relevent to younger people
with Downs.

Good luck with your searching.


Take Care

DaisyG

 

[jilljay]

thank you Amy and Daisy

Thank you Amy and Daisy for your kind words ..and deeds Daisy!!
Very much appreciated!!
My daughter is 'in the system' but because of her L/D is totally isolated!! Though she does have good respite in a L/D establishment.!
Everything going on for people with Alzheimers/Dementia in my City seems to be for people who do not have her disabilities!!
It just seems so unfair! Its just the contact with other carers in a similar position I want and suitable day care!!
I dont usually whinge so do apologise!!
Will just carry on bringing this problem to the attention of anyone i think might help! There might be something in the pipeline ,but I only believe when it happens!!
You all seem so very supportive and I do thank you all for your concerns!!

 

[shirleyc]

My daughter ,who has Down's syndrome and other problems, has recently been diagnosed with dementia too.We thought seven years ago that she was sliding into dementia,but because of all the other problems related to Downs,e,g depression ,mental illness etc ...they had to be eliminated before a diagnosis was made!
She was only 32 yrs old at onset and now is 39yrs old ( monday!)
How can the Alzheimers society help us? Have you a special section that deals with L/D?
We have made a fairly large number of phone calls to the A .S. ,but it seems that severe learning disability does not 'belong' in your society!Though certainly the people i have spoken to appear willing to give info and are very pleasant.
Can you please clarify this?
We have been told that 'the working age dementia group is NOT for people like her!
We are SO isolated!!

my brother developed alzheimer's symptoms in 2001. last year I had to put him n a state school because symptoms got worse. the typical drugs for treating the disease mad him worse. aricept and antidepressants. he was put on low dosage of syrequel, and klonepine, adn somethign to help him sleep from the attavan family. He is doing much better. also I fast and pray. shirley

 

[shirleyc]

alzheimer's downs syndrome

my brother developed alzheimer's symptoms in 2001 at about 48 years of age. last year I had to put him n a state school because symptoms got worse. the typical drugs for treating the disease made him worse. aricept and antidepressants. he became aggressive on them. he also developed seizures and had to start on dilantin. I am of the opinion the most commonly given drugs for alzheimers have a negative effect in downs. he was put on low dosage of syrequel, and klonepine, adn somethign to help him sleep from the attavan family. He is doing much better. also I fast and pray. shirley

 

[loppy]

Hello jilljay, please don't feel alone! My sister was diagnosed with alzheimers 3weeks ago, she has down's and is only 35. I am still finding it very hard to accept. Prehaps we can share any info or contacts that we get as it seems very difficult to get specialist advise and support on downs and alzheimers.

 

[jilljay]

Thank you for your answers

Thank you Nada ,Shirley and Loppy for your answers.
The information on L/D and dementia was very interesting Nada. My daughter's specialist is Dr Prasher!!A Nicer person you could not find!!
I have not been able to find a single carer in my position in my city ,so feel totally isolated!! Only 2 percent of Down's people have dementia at my daughter's age ,as you said ,Nada!!
We are now in our third year of NO day care, but do have respite care.
The info Nada gave re website is very interesting Loppy and is very good to act upon!!
Hope we can remain in touch and try to find out what is going on around the country for people like the person we care for and love!!
If any one has info,would be delighted to hear it!!