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Alzheimer’s in My Downs Syndrome brother. - Carers UK Forum

Alzheimer’s in My Downs Syndrome brother.

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Good day to everyone! I am new to the forum and desperately need some advice. My brother has Downs Syndrome (48) and has been diagnosed with second stage Alzheimer’s and I have found very little relating to this. He is under a specialist but very few answers have been given. He has been admitted to hospital 3 times because he was retaining urine and a long term catheter was put in after a scan revealed nothing untoward. We battle with his bowels as well and it fluctuates between extreme diahorrea to constipation. The specialist said that his brain is no longer sending him the signals to use the toilet. Our father died two years ago and initially we thought that he was regressing because of the trauma from my fathers death as they were very close but sadly that is not the case. He has regressed at an alarming rate in every area and from being fairly independent has become like a small child . My mum also helps care for him but she is 78 and needs a second knee replacement and is in constant pain. There are so many questions I have regarding Alzheimer’s in Downs and would like any help and advice with someone who has dealt/dealing with this. Thank you
Hi Tam.

Welcome to a quiet forum and difficult time of the year for far too many of the carer army.

Alzheimer's Disease combined with Downs Syndrome ?

Down's Syndrome Association :

https://www.downs-syndrome.org.uk/for-f ... s-disease/

Alzheimer's Society :

https://www.alz.org/alzheimers-dementia ... n-syndrome

A myth busting blog ... Alzheimer's Society :

https://www.alzheimers.org.uk/blog/myth ... d-dementia

If more sources are required , just let me know.

Medical articles ???

Any help / guidance needed on support services ( Needs and Carer Assessments ) / benefits / housing / wills / power of attorney etc. etc. ?

( CHC / NHS Continuing Healthcare ... a factor here ??? https://www.carersuk.org/forum/support- ... here-35998 )


Just shout !
Thank you for the links and I will have a read through them all.
Your welcome.

Need any more or advice / guidance ?

You know where we are.
Welcome to the forum. I'm glad you found it. A very supportive and knowledgeable group of people here!
I understand that sadly, people with Down's Syndrome often develop dementia.

The time has surely come when mum can retire from caring? Your brother needs round the clock care, and it will be much better if he moves out sooner, rather than later, so that you and mum can help him settle into a new home.

Start by asking Social Services to update his Needs Assessment (When was it done last?) and a Carers Assessment for mum.

I'm in the New Forest, and we are now at the beginning of campaigning for older parents to have the right to retire. Last month, a professor from Bristol University launched a paper looking at the problems older parents face. Next year, we will be looking more at how to identify parents who need to relinquish caring.

My own son was brain damaged at birth, he's now 40, lives in his own flat with carer support.