Aggressive Dementia

[ljwatson71]

My Uncle has aggressive dementia and was sectioned under the mental health act. He was kept in a secure unit for 28 days until a care home could be found. None of the family have power of Attorney so he has a social worker. He is a self funder.
He was in the first care home for 1 month, We did a CHC funding request but was not granted a full assessment. He was aggressive and they requested one 2 one care 2. They called an ambulance after an outburst and he was admitted to hospital for a week. The care home then said they do not want him back. He was then put back in the secure unit again until another placement could be found. The new care home did an assessment and he has been there since December 2024. Mid January he got out of the care home and was returned by the police, they did not know he had gone. In Feb they asked for 12 hours of One 2 One care £2900 a week. We agreed as we want him to get the care he needs. We applied again for CHC and got a full assessment (however the assessment nurse raised some flags about not having his meds reviewed or a mental health assessment request submitted. At the beginning of March he escaped again out of an open garden door) and was returned by the police. The care home requested 24 hour one 2 one, but we were concerned that as they had not done a med review or a mental health assessment they were not doing their job. That said we wanted him to be safe, during all of this time a family member has been visiting 3 times a week and having to wash him, change his clothes and encourage him to eat (this is how they covertly give him medication).
We finally get the CHC funding agreed and on the day the email went to the care home they called an ambulance and admitting him to hospital. He is now in the hospital with a view to be once again put in a secure unit, whilst we know he will be safe here, its not the outcome we would like for our Uncle.

The journey has been a fact finding one, also having to send emails and chase up things the care home and social worker should be doing, we feel that he has been let down.

He needs specialist care nursing homes do not seem to be able to cope with his needs, does anyone know of anything in the Barnet, Camden Islington areas?

Hopefully you don't mind my rant, when I see it all written down it makes me sad that he has been moved so many times and this can only be disruptive.

 

[DeeCee7]

Oh my goodness, that has been some journey your poor Uncle and you and the family have been through. I do hope he gets a suitable permanent placement soon. Sorry I haven’t the local knowledge you need, and we can’t recommend any specific homes on here. Maybe a chat on the helpline would be productive? Good luck with it all. I am glad your Uncle has a supportive family rooting for him.

 

[LLW]

Hi LJWatson,

I suggest that now you have CHC funding agree you should request that they ( CHC) find your uncle an appropriate nursing home ( close to you as NOK) and of course they will fund this now as it is deemed as a service being provided by the NHS - and not funded by your uncle.

Often once people are sectioned then they automatically get CHC funded automatically - so you could ask about this also ( maybe after your father is found an appropriate home).

Just so you know that CHC funded places can be taken at home or in an nursing home - depends on the risks. You say your Uncle has aggressive type dementia but this often means that he has some underlying symptom or infection that is making him aggressive and once this is found and treated he may be less aggressive - saying that when people are aggressive its often down to a dual diagnosis , or maybe infections or maybe something in his environment , or serious anxiety on top of his dementia diagnosis.

It is now CHC , there responsibility to assess his needs and ensue that he is found the most suitable N home that can meet his needs. If there is not one near you then it may be further away.

I would contact the hospital, ask to speak to the person who is managing your uncles care - ask them where do you stand as NOK ( i do not recall if you have POA or not) but ask them that you are included in any decisions made for your uncle, ask them to be clear about who's responsibility it is now to fin him the most appropriate nursing home ( they have contracts already in place with most) and see what they say.

At least they can keep you informed and at best thy can invite you to any meetings , reviews, etc even on ZOOM where they will review your uncle and make critical decisions.

You should not do any of this ( unless you are an attorney on his health POA) its now down to the CHC to find him the most appropriate home - but do ask that they involve you and see how far that takes you.

While he is in hospital ask for a medication review and any other assessments that you feel he needs and also if his capacity is in question ask them to do a capacity assessment also, once they manage to stabilise him.

If you find yourself asking questions and getting nowhere, most hospital have a PALS team who are there to help you get a response - Patient Advisor Liaison Service ( in S. London) - go to them or whatever they are called in North London and ask them to help you.

As NOK people should respect you as far as info goes but not having the POA in health could hold back certain things they will wish to discuss.

Do not let hem give you a list of nursing homes and ask you to do it - If they are now funding the cost its down to them, and they will review 4 3 months and again annually ( i think). Good luck LLW

 

[SAP]

This all seems like the services involved are not communicating with each other. Coming out of hospital having been on a section 2 , I’m rather surprised the home he then went to did not have a DoLS in place , there by preventing him from getting out. I can’t comment on what happens in the local authority but my mum is on a unit in a home , some of the residents can be aggressive ,my mum has her moments but it is all managed by the staff on duty. It really is down to the social worker to find a placement that will work. I do feel that had they kept him in hospital the first time he would have gone not a section 3 and therefore been eligible for 117 aftercare and funding. My view is they have rushed things and it has worked against them but more importantly your uncle is not getting the care he deserves. I would be having some strong words with social services about their responsibilities toward him and his care.

 

[ljwatson71]

Thank you all for your replies and support. My Uncle is still in hospital a care home came to assess him yesterday and said if he comes to them he will need one 2 one care 24 hours a day, I guess the CHC will either agree or say no, in which case they have to find another one. They are thankfully now looking.