care homes for people with early onset

[nmesko]

hello
We have been looking after my mother who is 60 years old and has early onset alzheimer's and is considered as "moderate to severe" in the progression of the disease. We have finally made that terrible decision that we can no longer cope and have finally been granted council funding for a care home. The council found a place for us that have had good CQC reports indicating that they "specialise" in dementia care. The home asked for an assessment with mum and after this assessment they refused to take her stating that her care needs were too high.
We are a bit lost and confused and wonder if anyone out there can give us some recommendations about homes that really do cater for those with early onset alzheimers (less than 65 years) and preferably have a community of people living together. We realise that this is a tall order but are now desperately looking!
thanks
natasha

 

[connie]

Hello Natasha, welcome to TP.

I have no idea which area you are in, so I will just talk in general.

wonder if anyone out there can give us some recommendations about homes that really do cater for those with early onset alzheimers (less than 65 years) and preferably have a community of people living together

There are homes which cater for younger dementia patients but they are usually few and far between. Some have maybe 2-6 designated places within a normal unit.

Often the younger person will be the only young resident, or maybe one of 2 or three. However, whilst this can be a big obstacle to overcome initally it often turns out that the difference in ages becomes not so marked quite quickly.

I know at one time in Essex there were no places at all for the under 65. I am not trying to paint a bleak picture for you, just trying to give you some facts.

My heart goes out to you, as my partner was diagnosed early (60)
and we had trouble finding places, even for respite.

Take care now.

 

[sad nell]

natasha, sorry your family are suffering too. my husband is early onset too only 58 and at severe stage, SS told me to look at emi homes for trev, but to be honest was not very happy with what i looked at, but have found a council run residential home which will and does cope with his complex needs, only for respite at mo . you need to look at as many as poss, and look beyond fancy carpets and furnishings, I know we want somewhere nice ,but the staff matter alot more. how they react with residents. Ican leave my husband in their hands and not worry too much because i know they care and always keep me informed, what area are you, hope i can help best wishes to all your family pam

 

[Brucie]

Hi Natasha

it is a horrible situation, to be looking for a care home that we want to be happy with - at the start, 'happy care home' seems a bit oxymoronic, but it just depends on the area and the particular home.

My first experience of facilities for people with dementia was the local NHS assessment centre, which was divided into two areas - normal and secure.

Perhaps on purpose, they showed me around the secure one first and I was appalled - behaviours, the way patients looked and of course the smell. They then showed me around the normal ward and that was much better - nobody there was in a very advanced state, it was simply institutional.

The first two assessments that were made for her were fortunately in the normal wards. Even having previously seen the secure ward, it was a severe shock ever to see her in there.

Fortunately, assessment centres are not care homes.

When a person's needs go beyond a certain point and an EMI type home is needed, it will never be really like one's own home. It needs to be secure, people do have accidents, residents will be in a variety of late stage poses there, and some may be agitated.

Ideally, a family will not experience an EMI home as a first go, but if so, then the normal rules still apply - the place should be clean, well-staffed, staff well-trained, atmosphere light rather than gloomy, no smells [accidents do happen but should be sorted at once]... and the management should be amenable to family involvement, and open visiting hours.

My wife's home specialises in early/young onset patients but there is a mix there as there are so many older people in need of EMI facilities. I can't see there being too many purely early onset homes around and for those that are, they will probably be massively oversubscribed.

 

[penguin629]

Hi Natasha

My Dad (65) has just moved into a nursing home a few weeks ago solely for people with dementia. Unfortunately at the moment he is the only young person in there. Everyone else is older, although they are in some ways more able bodied and communicative than my dad.

My Dad was sectioned in a secure unit at our local psychiatric hospital in a unit for young people with dementia. The nursing home staff came out to assess my Dad and another man also young. My dad was accepted, and the other man wasn't because they said he was too unpredictable and disruptive. Sadly they were in a position to pick and choose who they wanted. When my Mum was looking for a place she was told to search for EMI units and sadly in our area (shropshire) there are none specialised for younger people but to my Dad he doesn't see any difference in age.

The home has an excellent reputation (is non-profit making), is brand new and yes, has lovely fixtures and fittings. Every resident has their own room and they're all en suite. But the staff are wonderful and they told my Mum to come any time and they meant any time.

My Mum worried the home wouldn't accept my Dad due to his age but surely that's discrimination. Homes have to accept that dementia in young people is on the increase and I think it's shocking that they've deemed your mum with too high care needs. My Dad has sever dementia and cannot feed himself. But does walk and can just hold a cup.

keep looking and have hope that a home will want your mum and will give her the best care. We found one.

Joanne

 

[Clive]

I read that you have been given information about CQC. I presume you will have already had a look at the CQC directory of Dementia (EMI) homes in your area.

If not the web address is


http://www.cqc.org.uk/registeredservicesdirectory/rsquicksearch.asp



You might like to try various searches by region, local authority and postcode as I found you sometimes get different results…or it could just be me who gets things wrong.


Have you tried giving the Alzheimer Help line a ring? I always found they were helpful.

Best wishes

Clive

 

[Brucie]

I think it's shocking that they've deemed your mum with too high care needs.

I agree that at first glance that seems harsh, but the original post did say:

indicating that they "specialise" in dementia care. The home asked for an assessment with mum and after this assessment they refused to take her stating that her care needs were too high.

There is a difference in specialising in dementia care, and specialising in the care of those who have dementia who have the very highest care needs.

For instance, dementia care homes don't require - necessarily - secure access. That would be no use for residents who might put themselves at risk by walking out.

From the information given in this thread, it seems to me everyone has done the correct thing. The only element that messes that up is the particular case of dementia.

The home will be concerned on several counts

• responsibility for a new resident
• responsibility for the other residents
• responsibility for staff
• responsibility to tell the truth - if they can't handle someone, based on an assessment, they need to say that otherwise the person, other residents, or staff, may be put at risk

That is why care homes vary a lot in what they provide.

It is horrible, but dementia is horrible.

I took the key point of the original post to be the attempt to locate a care home for early/young onset people - it is so hard to see one's spouse, or a young parent, placed among people who have dementia and could possibly be their parents - yet are less affected by their dementia. I can't say how painful it is to see their face when they see a place full of really old people, yet they look so young still themselves.

I hope that Clive's suggestion will help you.

Best of luck.

 

[Sandy]

Hi Natasha,

Can I just add to Clive's advice that sometimes it's useful to look at Dementia care with Nursing if the person needs more specialist care due to the nature of their condition.

Sadly, many people with young-onset dementia can present with more complex and challenging behaviours.

Have you got back to social services and told them that the first home was no longer an option?

Also, if your mum's needs are great enough, she may qualify for NHS Continuing Care, which is offers definite financial benefits over social services funded care:

http://www.alzheimers.org.uk/site/scripts/documents_info.php?categoryID=200203&documentID=399

Take care,

Sandy

 

[nmesko]

Thanks very much for all your replies and support. I was really surprised by how many people responded - really a great help.

I think that perhaps I didn't make myself clear in the first place. Yes, we started our search by using the CDC/EMI facility and shortlisted 5 places in Bucks/Berks all with a rating of 2 or above (the council will only pay for places rated 2 or above). One had a vacant place for people under 65 years and it was this home who on assessment told us that Mum displayed "too challenging" behaviour.

So I guess my point is that the CDC/EMI classification is just not a reliable enough as to whether homes can really cope with challenging behaviour. We are now looking nation-wide, and using the CDC/EMI to shortlist homes but relying on recommendations from people otherwise we will end up having assessment after assessment after assessement with my mother being refused care.

So any recommendations that people have would be really, really helpful!

Thanks again

Natasha

 

[michaelhamilton]

Diagnosis

Hello Natasha,

My wife is aged 58 (tomorrow) and has dementia but not Az - she has FTD (Fronto-Temporal Dementia) otherwise known as Pick's Disease.

She is in 7/24 care in a NHS Dementia Assessment Unit waiting for transfer to a high-demand dementia care home run by a Housing Association that provides the Social Work Department of our local authority with care places.

Some patients with high dependency needs may have Az but some also have one of the FTD variants but the FTD has not yet been diagnosed.

In your case, knowing very little about your Mum, I’d like to suggest that you go back to her family doctor and ask for a diagnostic check to see if there is something more than Az wrong with her. FTD and other dementias are often misdiagnosed as Az.

Also see the Social Work people – does Mum have a designated social worker? Between the NHS and Social Work, they should be able to find a suitable care home for her. It is not really a matter for YOU to find a care home – it is a specialized area and you should get help not have the problem passed to you.

I worked in the NHS Community Services for 14 years and the advice in this post is based on a lot of experience. I hope it is helpful.

Blessings,

Michael

 

[TinaT]

My husband also does not have AZ, he has Lewy Body Disease. He was early onset dementia; in his 50's through the early, middle stages, and mid 60's when he moved from moderate to needing full nursing care.

As many who have been on this Forum for a while know, I had extreme difficulties in getting my husband out of the assessment ward. The Consultant had decided that his behaviour was too difficult to be catered for in any type of care home and I was faced with the prospect of him being on the assessment ward for many years, possibly for the rest of his life! I had a very, very hard fight to get the Consultant to understand that the assessment ward should not be the long term placement for my husband. He was on a section III which meant that I had very little say over his future.

Ken had been in respite at an EMI Nursing Home the year before. I went to see the Manager of this home and more or less threw myself at his mercy. I told him what I felt his behaviour was like, what the Consultant's fears were and asked him would he allow Ken to be considered for admission? He backed me up all the way and said that he felt they could handle Ken successfully, especially in view of the fact that they had taken care of Ken for a week the year before and knew him. I cried with relief!

I arranged a review at the hospital with social worker, OT's, manager of the assessment unit, the Care Home manager and the Consultant. I took our son and Ken's older brother for back up. It was a very hard meeting and the Manager was a fantastic ally. Each aspect of behaviour the Consultant pointed out as a problem, he said that he felt they could manage. Eventually she agreed because the Home was not only very close geographically to the hospital, but also had close ties with the hospital CPN and the Consultant was herself a frequent visitor at this home.

So, in our case, we had not even got the option of trying to find a young onset home. The Consultant wouldn't have agreed and Ken would not be able to be moved there. I visited many EMI homes around my area. Not one was for early onset residents.

He has now been in the EMI Nursing Home for over a year and there have been very few problems. The staff like and take excellent care of him. The nearest resident in age to Ken could easily be his father or mother! The ratio of men is minute; there are 3 men including Ken and 21 women. So in that respect it has been hard for both Ken and myself. I doubt at his stage of the disease that he could make friends, even if they were his age group and gender, but he has remarked to me about the much older age of all the other residents.

I thank my lucky stars for the home he is in. In an ideal world there would be EMI Nursing Homes specifically for younger ages - but -

At what age would you think my Ken was not suitable to stay in an early onset Home? Many dementia patients live for 15 years and more so they themselves reach old age. Would I be faced with moving him out because he had reached an age not considered early onset? He will live for many years I expect as he is fit and well physically. Would it be a good thing to move a severely affected man who is completely confused as to where he is at the best of times? How would we overcome such problems which will arise in early onset homes?

xxTinaT

 

[michaelhamilton]

Early onset - care needs

Just a comment on previous posts.

Clearly the words "early onset" are important. So too are "care needs".

However when placing one's Loved One in 7/24 hour care when care back home becomes inappropriate it is more helpful, I would suggest, for placement to be based on a qualified assessment of needs and not on the age of onset.

Of course ideally one does not want one's LO placed among folk who are 20 to 40 years older. But Mary is in that situation and she is surprisingly tolerant. Early onset is so rare that a care unit occupied only by younger folk does not exist.

What matters to ME and to HER is whether the building has enough friendly competent staff across the required range of disciplines, is warm, secure, clean, fresh smelling with good food and distractions, good laundry, en suite bathrooms, safe bath and shower facilities etc. Most of Mary's fellow residents never speak and spend much of the day dozing.

She paces incessantly staring into space and sucking either her fingers or a baby's teething ring.

We must be careful not to confuse OUR preferences with THEIR care needs. There is often an apparent difference but the professional knowledge, assessment skills and assessment experience of qualified and experience medical and nursing staff are best relied on.

One final thought - Az develops more slowly than the FTDs. It is often said that one month of FTD has a worse effect than one year with Az. FTD sufferers are going to deteriorate far faster than Az sufferers and sadly mostly live for only a few years from onset (not from diagnosis which is often delayed). Pick's disease results in a mean age of death of 6 years from onset and so the choice of the correct care level of home is critical if later transfer to anywhere other than a hospice is to be avoided.

Blessings.

Michael.

 

[michaelhamilton]

NHS or Local Authority?

For 7/24 care, the dividing line appears to be whether the patient has medical needs or simply care needs. The NHS provides accommodation and services for medical needs - and the local authority provides for non-medical care needs either directly or by placements in care homes.

If a patient has severe behavioural problems such as aggression or violence that simple kind care is inadequate, then usually the patient is moved into NHS care in a secure medical (psychiatric) unit.

If any reader has experience of this perhaps some sharing of what happens would be generally helpful. Thank you.

Blessings,

Michael.

 

[Brucie]

Hi Michael

Of course ideally one does not want one's LO placed among folk who are 20 to 40 years older.

and

We must be careful not to confuse OUR preferences with THEIR care needs.

I think the above sums it up, really. We, as carers, don't want that.

Up to a certain stage, our loved one also will not as it may increase their confusion.

I suspect however, that by the time the care needs reach that stage, the problem will mostly be with the carer's perceptions and sensitivities.

Beyond a particular stage - and that will be different for all cases - the care is what matters, not the age of the fellow residents.

Quite a few of the dementia hurdles are those we understandably put in our own way - speaking from painful experience.

Az develops more slowly than the FTDs. It is often said that one month of FTD has a worse effect than one year with Az.

I have only experience of mixed dementia, where I found the early stages were certainly slow, the mid stages were fast, and the late stages are interminably slow and apparently unending.

 

[connie]

Quote:From Micheal
Az develops more slowly than the FTDs. It is often said that one month of FTD has a worse effect than one year with Az.

From Bruce
I have only experience of mixed dementia, where I found the early stages were certainly slow, the mid stages were fast, and the late stages are interminably slow and apparently unending.

With reference to the first quote I am friendly with someone whose wife has FTDs. Diagnosed shortly after Lionel, she even went to the same day centre as him, and now they have ended up in the same wonderful care home.

Deteriation sometimes runs on a par, sometimes no. I think once again it is down to something within the individual. IMHO

With reference to Bruce's quote I can only say I echo his words.

Unfortunately the end will always be the same.

 

[michaelhamilton]

Just been informed that Mary is being transferred to her Care Home on Monday 11th May - 5 weeks from admission to hospital for assessment. Just sheer luck it is so soon - her level of care need and predictable rapid decline ensured short waiting list. They don't last long so there are rooms becoming available far more rapidly than with Az.

Blessings,

Michael.