Anyone with Downs Syndrome who have a similar experience with dementia

koh samui

Registered User
Mar 31, 2012
1
0
I have recently been told that my sister who has downs has been diagnosed with dementia she is 49, my Mum who is her carer and is 71 is not accepting it. I want to help them both but need advice and more information. If anyone else has a similar situation your advice would be apprecaited greatly, this is all new to me and I am embarrased to admit I know very little about this subject
 

Grannie G

Volunteer Moderator
Apr 3, 2006
76,326
0
Kent
There are at least two carers involved with Down`s Syndrome and Dementia. I will try to find their posts.
 

jilljay

Registered User
May 22, 2005
74
0
Birmingham
Hi Koh Samui. Re D.S and L/D

I do seem to have missed a number of replies on this site and do apologise.Think I stopped looking because so little is done for a person with Down's syndrome and Dementia by the Alzheimers society. I do have a Alz supporter now (2012)
who helped me get my respite nights back when the PTB wanted to take all respite nights given for the year ..off me because of the extended time I needed in hospital.Lots of things have happened since April 2011 and none that I could call positive.( I think you will all read various pieces of writing that say positive things are happening, but what it doesnt say is most of it is theory only.) I had a major heart op in November and the fight and upset to get extended respite for my daughter was to be frank ...unbelievable. The op left me with a slight left sided stroke. Have received a Direct payment which pays for someone to come in AM to do 'the heavy work getting my daughter up and dressed and of course the opposite in the evening. We still have no daycare as I want a suitable base and well trained staff. Until someone gets up and realises, and fights for us, then I cant see any improvement in the near future. Am sure there must be areas in this country that do provide the help info etc that is needed. I expect you are either lucky or unlucky where you happen to live. Donot want any other Carer to go through what I have experienced!!!
I know I havnt answered your question Koh Samui but can only suggest you talk to your local Carer Group/local Social Worker /GP to see what help advice etc is in your area. I have approached the Downs Association and Mencap over the years but was very disappointed in both of them. Perhaps they can be of some assistance now the problem is being talked about more openly? Your Mom (at a guess) does know something is very wrong but just not admitting it yet . I was told by my daughter's day centre about 10 years ago, that the only reason she was behaving differently to her 'norm' was because she was getting older so getting a bit stroppy!!! I knew immediately that was very wrong!!!
Am thinking of you all and hope things can be sorted and help/advice/info will be forthcoming ASAP![
Hope this doesnt come out too garbled but a bit more difficult to write/think these days!!!

Jill./COLOR]
 

Grannie G

Volunteer Moderator
Apr 3, 2006
76,326
0
Kent
I am sorry you have had such a difficult time Iill, and it doesn`t seem to be getting any easier for you. xx
 

carpe diem

Registered User
Nov 16, 2011
433
0
Bristol
Hi, I go to a memory cafe organised by the alz society where there is a lovely downs syndrome man, I played soft ball 10 pin bowling with him all afternoon and he gave me a big hug at the end.
You could phone the alz society ask if there are any cafes or events near you, also just ask them for any advice you need. Have a look at some of the "fact sheets" on the alz website there is lots of advice there.
You may also want to phone social sevices and ask them to do an assesment so your mum could get some home help?
Best wishes x
 

Anne&C

Registered User
Jan 15, 2010
112
0
Northern Ireland
Hi koh samui. My sister is also 49 this year and was diagnosed with dementia about 2 years ago so I know what a huge shock the diagnosis must have been to you and your mum. Even though we had all noticed the signs, and in some ways it actually helped to know why the strange behaviours were happening, it felt like a very cruel blow to us, her family.

she has lived in a supported living set up for many years and already had a Social Worker in place so it was easier in some ways to access help. She was initially prescribed Aricept which was later changed to Ebixa because the Aricept didn't seem to agree with her.

Our main struggle has been with her care provider who wanted to move her to a different care placement where she would be with people who were much more severely disabled and where we felt, without adequate stimulation, her condition would deteriorate rapidly. Thankfully after much argument and the involvement of Social Services they have agreed to make changes to her current placement instead that will allow her to remain there for the time being, or until there is a significant deterioration in her condition.

Like jilljay I found any advice offered by Mencap and the DSA very theoretical - I was told that in Northern Ireland where we live any research is still at an academic stage and there is little practical advice or help specifically aimed at younger people with learning disabilities and dementia. The local branch of the Alzheimers Society were very helpful as was Carers NI - our local equivalent for Carers UK. They gave us the language we needed to articulate her rights to Social Services and ultimately the care provider. And of course this forum too was and is so supportive and helpful - both for answering my questions and also for letting me trawl through finding little bits of information on my own. The fact sheets are great and very helpful but it's only from reading the threads on here that you see the very human stories behind the facts and that's where I've learned most.

Really helpful for me was the Compassionate Communication document.

The following 2 leaflets from the DSA are very basic but might be useful, particularly for your mum if she is finding the diagnosis difficult to accept - there might be something in them she can relate to. Down’s Syndrome and Alzheimer’s Disease and Ageing and its Consequences for People with Down’s Syndrome

Oh and while I remember to say it, you have nothing to be embarrassed about - I also knew next to nothing about dementia until I was personally affected by my sister's diagnosis and had to find out fast. I think everyone is the same.

Take care and please feel free to ask any other questions that occur to you. I'll answer where I can.

Anne xx
 
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jmilliken64

New member
Oct 21, 2017
2
0
Hi. I just joined this forum because my sister - age 51 - has Down syndrome and dementia. The doctors seem to be at a loss about how to treat her symptoms, which include sleeplessness. We feel that if we can get her sleep under control, then we can tackle the other symptoms - confusion and anxiety, inability to focus or follow directions, hallucinations, etc. She seems to be afraid to go to sleep and will not go to sleep if left alone in her bedroom. As a matter of fact, she won't stay in any room alone. Normal sleep aids (like Tylenol PM) seem to make her dementia symptoms worse. It has been heartbreaking to see our fun loving and vibrant sister descend into this state of fear and confusion, and we are hoping sleep will help. We would like to get some sleep too. We are following all the non-drug instructions to minimize her symptoms but they are not enough. Hoping there is a drug that helps her sleep and possibly reduces some of the other dementia symptoms she experiences. Some of you were at this point 5-7 years ago. I'm planning to visit all the links provided in your discussions, but I'm hoping you will also share what you learned.

Hopeful in the US,
JoAnn
 

SnowWhite

Registered User
Nov 18, 2016
699
0
A few years ago, as part of my work, I met a man with Down's syndrome and he was in his early 50s. He was quite lively and chatty but changed very quickly into someone who always wanted to sleep, wasn't very interested in anything and started to lose weight. i didn't see him for a while and then heard that he had been diagnosed with dementia and sadly died not long afterwards.

To be honest after his parents died and he went into residential care he didn't have much of a life. I used to feel sad that when he was rapidly losing weight they sent him out in clothes about 3 sizes too big.
 

jmilliken64

New member
Oct 21, 2017
2
0
A few years ago, as part of my work, I met a man with Down's syndrome and he was in his early 50s. He was quite lively and chatty but changed very quickly into someone who always wanted to sleep, wasn't very interested in anything and started to lose weight. i didn't see him for a while and then heard that he had been diagnosed with dementia and sadly died not long afterwards.

To be honest after his parents died and he went into residential care he didn't have much of a life. I used to feel sad that when he was rapidly losing weight they sent him out in clothes about 3 sizes too big.

That is sad. No one should be treated like that. Fortunately, we have a large family to assist in my sister's care, and we have some local charities that help. She is still interested in many of her usual activities - listening to Michael Jackson music, dancing, drawing and coloring, playing with cards. But she doesn't do any of those as well as she did them before, and she can no longer focus for long periods of time. She used to be able to carry on a conversation, but no longer. And sadder still, she knows something is wrong with her abilities - not being able to follow simple instructions we give her - and she keeps apologizing for it. She needs constant care now, rather than part-time care. We're trying a new drug that has sleepiness as a side effect, so maybe that will help. But I fear that this is the beginning of a rapid decline. So I'm trying to learn from others who have gone through it, painful as it might be for them to share their experiences.
 

lemonjuice

Registered User
Jun 15, 2016
1,534
0
England
Yes someone I knew whose sister had Downs Syndrome developed dementia in her 40s and on reading up on it at the time it seems it may well be linked. We already know Parkinsons has a tendency to lead to dementia and as Downs Syndrome people are living longer it will probably become even more common to find other diseases develop with any illness which affects the brain.