Accommodation For Person with Downs Syndrome with Dementia

Thank you. This is my very first post. I am in desperation, my mum and myself are looking for a residential home for my brother, he is 56.

He has always had high quality downs and has been treated the same as his siblings (though this was not always the case, my bro and I always got away with a lot!).

However, we are now, due to his age in the most desperate situation. He has been living within a supported liviing property for around 4 years and been immensley happy. Now due to dementia he is uable to live there.

He will be devastated when he is told the news, but we are struggling so much to find something comparable. All the homes we have seen are majority women (which was surprising), that sit around.

We were aware that it is difficulty to find somewhere that has activities for my brother or even people around his own age!!!

Is there ANYONE that lives around RCT that may know or have experienced any homes that may be suitable.

I thank you all in advance for your replies.

1 Like

Where does he/you live? I’ts important to try to maintain his situation as far as possible. I know it’s been possible to get extra help and still support in supported living so not sure why this might not be possible. I’m aware of more than one person where this helped maintain them best and the district hursing team defended for one person them staying - said they’;d never get as good care on a hoem as they were there!!

Hello, I am really sorry to hear that you are faced with this worrying situation. It may be worth asking that a Best Interests meeting is called , and if there is a learning disability team your brother is linked with, or a learning disability nurse, perhaps you can ask if they can join the meeting?This might give you all an opportunity to look at the options for extra support to maintain the place he lives in now and to look at all the options open to your brother.
HfT also have some really helpful guides around Best Interests and they have a Carers Helpline you can ring for support and advice.

This link gives details of the Carers Support Service they run.

Mencap also have a helpline on 0808 808 1111 Mon-Friday 9am until 5pm
Both organisations can offer information on support for you and your brother.
What does RCT stand for, please, by the way?

Hi, What area do you live in? Have you got any support from a learning disabilities community nurse as it’s not satisfactory that he has to move because his needs may change? He needs a mental capacity assessment and a social care assessment. Update me please I’m a learning disabilities nurse and very passionate about learning disabilities.


Hi, I’m really sorry to hear that you have been faced with difficult decisions with, what sounds like, very little support from statutory services such as social care and health. There are people who should be helping you make this decision and involving your brother as much as possible in any decisions. As others on the forum have said, one of the options to look at is whether your brother can be given the support he needs where he lives at the moment. Is he still happy living there? Do you think he could be given the extra support he needs where he currently lives? These are questions that a social worker or learning disability nurse should help him and yourselves to look at. If you think his current home might no longer be the right place (maybe he needs adaptations that can’t be made to his current house or he needs nursing care) then a social worker or nurse should help your brother to find the right place for him. It would be a good idea to ask a social worker whether there are any learning disability support providers in your area in Wales that have good skills in supporting people with learning disabilities who develop dementia - this might be in his current home or in a different setting which could be supported living, residential or nursing care. As you have implied- going to live in a nursing home for older people who have dementia is unlikely to be the right response for your brother and he should have an assessment that helps you all to know what would work best for him.
I wrote some information about how to support families after their relative with learning disabilities develops dementia- you might want to have a look at this or share with a social worker/ learning disability nurse so they can think about the support you all need as a family.
There might be a local advocacy organisation either for people with learning disabilities or for family carers that could help you to fight for the right support for your brother. Ask your local authority for the contact details. Please let me know if you would like any more information.


Hi Rosemary.

Sorry for time taken to reply I hadnt realised I had received a reply until now. We live in South Wales, close to Cardiff.

We have beeen continuing to look for somewhere else. They are saying in his home that he is no longer suitable to stay there because of dementia. Thing is like everywhere, it’s the home that is understaffed that makes it difficult. He is getting more demanding.

The difference in cost is also immense. Had a reply from the first preferencial home, £1500 per month. He would have to pay this which is £500 over his gross payments. How is my mum supposed to find that money?

Just don’t know where to turn. Any help would be great. Thank you

Hi Amanda.

Thank you so much for getting in touch. We are in South Wales, close to Cardiff.

It was only a month ago a meeting was called and we were told by all these people from his current home, his carers, his social worker that we met for the first time she has only been in place 3 months and met my brother once before! Nurse from somewhere that has met my brother previously, someone from social services and an advocacy person again whom we had not met.

They just gave us a list of local homes, some private that are way over his benefits so would have to pay a fortune.

My mum is 83. They are putting pressure on us. Homes seem to want to speak to his social worker that we have only met once!

Any help greatfully appreciated.

Thank you so much Christine for taking the time to write to us.

It seems that all the people in charge of his home want him to go because he may be becoming a little harder to look after. They are saying cos he wakes at night he may fall down stairs though he never has. He has problems with incontinence, but he has diverticulitis, which is very diet controlled and they dont follow that. We agree it is very unpleasant to deal with this but as a carer doesn’t training explain that this can be an issue with dementia. I am sure he is not the only one!

We believe he should be closer monitored by his GP re drugs, and an independant carer to take him out sometimes or be there to look after him, if only a hour or 3 a day would make a big difference.

We have to date contacted 11 homes but none suitable, affordable or where we could let him live. With my mums age this is going to come to me to decide. I am disabled myself physically, so it is important we get something sorted out.

Please look at previous replies re the professionals, i.e. the social worker he hasn’t had one for 15 months, has had 1 for 3 months that has met him twice. We were called to a meeting with several social sevices, professional we hadnt met.

If you would like to speak to me or my mum I will happily give u my tel number (Please personal message me).

Thank you again. It means a lot to know we have someone to speak to.

People’s thoughts I think are all worth looking at - get an advocate involved - if they are talking about moving hom fromwhat is his home as he’ll have a tenancy, this is a major decision. If he’s thought to have capacity he would still be etitled to an advocate to help him. I would want to press very hard with the social worker who has the responsibility to look at commissioning extra supprot in his current placement. In addition, the Local authority has to come uo with a suiotable placement so they can’t make hi pay an additional top-up unless they can’t come up with a suitable alternative. I could suggest maybe gettign soem advice on the law from Belinda Schwehr CASCAIDr too so you know what you can make them do - it’s a charity and you can go on line and book a phone call - and she really knows her stuff!! Mencap i think do also have services in Wales so might eb worth talking to to see if they might eb able to help at all BUT when we talek about his best interests it would not be in his best interests for him to move - it would be likely to accelerate his dementia dificulties. AND he will have a right to live there as it’s a tenancy xso again worht looking at his tenancy and seeing what could evict him - and I’d think they would have t take it to court if he won’t go!! Might be worth exploring if there are any local home care services who migth eb able to help with extra support. Hope this is helpful - does feel a bit like make people do their jobs BUT also you are entiteld to be consulted and your viess taken into account…

hi everyone thank you for your comments. My brother who has downes syndrome is now in a position that he has to leave his supported living home as his needs have escalated and changed. After much convincing my mum is now on board with this, however the homes that we have been referred to and that we consider suitable all have top up fees! Will he have to pay these extra fees? He has less than the allocated amount in savings however years ago my mother wrote her will splitting the house between 3 with my other brother. however she has been told that he will have to use any money he gets to offset any charges my mom is 82 and fit and healthy so hope will not be releasing any monies soon, so where do we go for help with fees?

1 Like

spot on response Christine.