Down's Syndrome and Dementia

For issues specific to caring for someone with learning disabilities
Hello Everyone :) ,

I am new to the forum and was wondering if there was anyone else here who might be caring for someone with Down's syndrome and dementia? I care for my relative who has both conditions, and it seems like there is no support available at the moment for people in this specific position. This strikes me as odd and incredibly unhelpful, especially considering that around 50 % of people with DS may develop dementia pretty early in life.

Dementia is a crushing blow for anyone, but add in the learning disability too and it is so difficult, both for the individual affected and the carers

So if there is anyone else in a similar position, or who knows a bit about the area, it would be good to hear from you. Thanks :-)
This week I read a leaflet by the Alzheimer's Society relating to Early Onset Dementia, and it explains why those with Down's Syndrome are very likely to develop dementia. I was VERY impressed by the leaflet, and would urge you to order one. My wonderful grandmother developed Parkinsons Disease and later dementia, both her sisters developed it too. Apparently, there may be a genetic link, but my dad was OK when he died at 78, so that's not so good.

Thanks for letting me know about the leaflet-I'll look into it :-)
It's a perfectly valid question: but think about the maths. My son has Downs Syndrome and Diabetes Type 1. How many other people are in that situation, and is there a need for a specialist resource, or is a multi-disciplinary approach a better solution?
Viability - all depends on the numbers, and the geography.
Knee jerk (bleeding heart) solutions are invariably wrong: The Terence Higgins Trust was set up to provide hospice care for people with AIDS, and wasted millions on buildings before they realised their mistake. People with AIDS didn't want to live in a hospice, and new medications meant that they didn't have to anyway.
Sure,I am arguing for a personalised service, and that is fair enough: people are not the sum of their medical labels.
Hi Helena,

You may find this older discussion of interest ... entia-4012

By Scally
is there a need for a specialist resource, or is a multi-disciplinary approach a better solution?
These last 12 months we have found a multi disciplinary team to work better for our R. Some places wanted to treat his autism 1st, others his deafness, others his challenging behaviour. However, they are all part of him, so his care/development need to reflect that. Touch wood we are in a far better place than we were 12 months ago.

x x
Hi Rosemary,

Thanks for your message and the links included, I'll have a read. :-)
Hi Helena
I see you posted your msg over two years ago. I hope you see this as I would like to chat with you if thats ok? Or anyone else in a similar position, I registered with Carers UK today and this is my first post. I am in the same position as you, I hope all is well with you and your family member and you are both doing ok.
When our Mum died 9 months ago my brother came to live with me, he has DS and also has dementia for a 2/3 years now. It's such a cruel combination of two severe conditions. It's been difficult we've one other sister who is very busy with a husband a four kids and work. I also recently split from my partner of three and a half years. I feel pretty alone and sorry for myself right now, I'm reaching out....

Welcome to the forum. My son is 39, brain damaged at birth, affecting some areas, but not all.

it's no good trying to deal with a Downs/Dementia situation without help., There is no shame in asking for help, because the more help you get the longer you can support him.
He should have a Needs Assessment from Social Services, and you, a Carers Assessment, at least once a year, sooner if needs change. Does he go to any day services?
Hi Bowlingbun thanks for the reply. Sounds like your son has very complex needs too, they certainly keep us on our toes.
Yeah we had done our assessments with the social worker 8 months ago, things just take such a long time. Things starting to happen now tho, he got a place in the local adult centre about a month ago and he loves it and its great it gives me 3 + 1/2 hrs to myself. Also waiting on a verdict on direct payments, if all goes well hopefully should get another 8 hrs p/wk respite. Altho now that I have split with my boyfriend I have nowhere to go and nobody to play with (Johnny no mates) 😔 Spose I'l just have to wing it.
Do you get much support?