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Looking for help for early onset in the West Country

DanielJOwen

Registered User
Aug 4, 2009
7
47
Barnstaple, North Devon
Hello - This is my first post and is both an introduction and a request for any advice or information that anyone might have.

A close relative of mine was recently diagnosed with early-onset Alzheimers (possibly the same form of the disease that Terry Pratchett has, but I'm not sure). She is 58. Her diagnosis came relatively late - she had been showing many symptoms of dementia, as well as paranoid delusions, for a few years, but these were put down to extreme stress and depression caused by a legal dispute she had been embroiled in. There is a long, sorry tale about the care and attention she has received from both the NHS and social services, but that's probably for another post.

She is currently in care in an NHS elderly mental health care unit in Dorset. Having been held, against her will, under both sections 2 and 3 of the Mental Health Act, she is now a voluntary patient. She has long periods of lucidity during which she understands that she has Alzheimers, and has consented to received treatment (principally medication). However, the manifestation of her condition at other times means that it is not safe for her to live in her own home any more. We have been trying to find a care home for her that is closer to us in North Devon.

Our problem is this: she is a young 58. She is physically in good health and very active. When she is out with her daughter, they get mistaken for being sisters. In terms of her cultural tastes and interests, she is 20 years younger than her actual age. But, understandably and for obvious reasons, care homes for Alzheimers patients are focused on caring for the elderly. Not only does that mean that all their other residents are elderly (usually in their 70s and 80s), but the design, function and appearance of the facilities is focused on their needs and tastes. There is nothing wrong with this - but it would be completely wrong for my relative. She feels very isolated where she is right now because she is so much younger than everyone else there. I think she would find the appearance and atmosphere in the elderly care homes that we have visited so far to be profoundly depressing.

What compounds the problem is that care homes need to be specially registered and insured to take in residents under 65 and it would seem that the required registration is not assured - one place that we saw that was brighter and more modern than the others cannot take her because they had their registration request declined.

We are in Devon and she is currently in Dorset. We had hoped to find her somewhere closer to us but our options seem to be so limited that we will look anywhere in the country. We need to find a care home that specialises in early onset Alzheimers, and would be good for a physically fit, young-at-heart 50-something woman in the early to mid stages of the disease (but preferably one that could also provide nursing care for the later stages, too). Ideally in the West Country, but we'll look anywhere for the right place.

Have been in touch with the Alzheimers Society, who have been supportive and as helpful as they can be, but they just don't capture this information and so have been unable to offer detailed advice.

Many thanks for any help or information anyone might have.
 

DanielJOwen

Registered User
Aug 4, 2009
7
47
Barnstaple, North Devon
Sorry

Really sorry - as soon as I posted this, I saw there was a whole section on this forum for younger people with Alzheimers. This thread should probably go there if a moderator is able to move it. Apologies.
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
Hi Daniel and welcome to Talking Point

You have a challenge before you, because very few care homes of the type you need will be geared to the needs of, or populated by people who have, young onset dementia, of any variety.

Beyond a certain stage that doesn't matter, because the age of the resident really doesn't matter.

My wife went to her care home at age 61, and it is a home that specialises in younger people with dementia. The fact is that now, 8 years on, we see a 97 year old resident who wanders the place, but none of the young onset residents can move unaided at all, and the state of any other resident is simply not an issue for the younger ones.

However, the stage of the dementia determines that, and your relative is still at the stage where the state of those around do affect things. When my wife was 58, the same was true and we were banned from day centres because she couldn't figure out [and showed it!] why she was there with so many so much older people.

I'm replying so you see that young/early onset cases are not that unusual. Facilities for such cases at any stage of the process are minimal, in my experience.
 

carrie99

Registered User
Apr 26, 2009
175
Yorkshire
Scary!

:)It must be horrible to be such a young person in a care home. I am 52 with Alzheimer's and still very much myself, but my partner says he will be my carer as long as is possible. I am in the very early stages at the moment. I have plucked up courage to go to one or 2 local Alzheimer's get togethers and have actually enjoyed them. (But there is still that great unknown ahead....:))

carrie
 

katherine

Registered User
Sep 5, 2006
57
hi there
I've looked into this on and off over the years. There's a care home for people with early onset in Cheltenham and also there's a place called Moderator's Note: As per Talking Point's terms and conditions health and care providers can not be named which might be worth checking out. they take younger people but need referals from bristol health care trust but there may be a way of swinging that? who knows... if not they might know of other suitable places.
all the best and take care
Katherine
 
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KatherineW

Volunteer Moderator
Oct 2, 2007
12,654
London
Hi Daniel

Welcome to Talking Point.

I'm not sure if you've contacted the Alzheimer's Society National Dementia Helpline in relation to this or not?

If not, it might be worth doing so: they will be able to send you a list of homes that are registered to care for younger people with dementia, in an appropriate area. There may not be very many, but the helpline will at least be able to give you information about what is available.

The helpline number is 0845 3000 336, and more information about the AS helpline can be found here.

Best wishes
 

margaret101

Registered User
Jul 17, 2008
56
clacton on sea
under 60

I know what you are up againts my husband was 57 when i started to look for some where I got that trough the hospital
when I finally got a place they were only registered for younger people 60 and upwards that ment they had to get yet another registration for under 60 before my Bill cauld go there
I can only wish you luck in your search for a home for your relative xx marg
 

jackie place

Registered User
Aug 4, 2009
93
eccles manchester
Daniel

Hi.

I am new to this forum and i am wondering how do you know when the time is right for a care home.

My Husband Peter is 62yrs old although he does have trouble dressing himself ( like Buttons on Shirts, fasterning belts putting socks on he is ok he has trouble eating and cannot hold a knife and fork together so sometimes he using his fingers which causing quite a mess, he also shouts at me for no aparant reason I am not sure how the illnest developes but would be interested to know from other carers if you can advise me

Peter was only diagoised at Christmas but we think that he has been ill for some 2 years as the weight was dropping off him and he was loosing things and forgetting where he had put things.

I only need some advise I am in gthe middle of trying to get a Social work for both of us as neither of us have one only me has a Counsellor and a lady from Age concern but this is not a Social Worker. Thank You jackie x x x:eek:
 

Grommit

Registered User
Apr 26, 2006
2,127
Doncaster
One of the reasons why I fought for Direct Payments was to be able to stay at home and look after Jean myself.

It was made clear to me that there were only two alternatives because there were no places for the under 65 year olds with dementia:-

1) Jean would be allocated a place in a Nursing home which was separate from all the other residents. This turned out to be a room on her own without any contact with anyone except the care staff or

2) a place in a psychiatric ward with the NHS.

If I wished to continue working I would have had to take her to one or other of these places each day before I went to work and collect her at the end of the day to bring her home, a round trip of some 20 miles on top of my normal journey to work and back.

The state of care in the UK for EOA is parlous and totally, totally unsuited to the needs of the patients.
 

DanielJOwen

Registered User
Aug 4, 2009
7
47
Barnstaple, North Devon
Thank you

Thank you to everyone for your messages - even the ones that depressed me! :)

We are close to reaching the end of our tethers. We have been astonished at the downright rudeness with which we have been treated by some care homes in their haste to avoid having anything to do with us as soon as they hear the words 'early onset'. Other places have been more polite, but still unable to help. We thought we'd found one place - an elderly care home but more suitable than most - only to find that they were unable to get certification for under-65s.

My mother-in-law (the relative with Alzheimers) is currently in the care of the NHS, having been taking into care involuntarily under the Mental Health Act (first section 2, then section 3). She has been treated as one would treat livestock: she has been moved around without either she or us being notified, let alone our consent sought; it took four months for them to do the neurological tests so she could be properly diagnosed, and then another month before they would actually treat her. She has a consultant with the bedside manner of a bulldozer whose main achievement has been to recommend highly residential homes that then all insist they would be completely inappropriate and won't even consider taking her. She has a social worker who is himself on the brink of a nervous breakdown and mostly just likes to remind us of how bleak our position is. She has an 'advocate' who does nothing at all. All of these people are desperately keen to have absolutely nothing to do with her as soon as possible. She is, to everyone but my wife and me, a nuisance. It makes me very angry and very depressed.

I wonder if this is an issue that the Alzheimers Society could take up? Or something for a smaller, dedicated charity to campaign on or tackle in some way?

In response to individual posts:

Katherine - if you are able to provide any more information on the place in Cheltenham, it would be gratefully received. Treetops will not bend on their Bristol rule.

KatherineW - the AlzSoc helpline was one of the first places we tried; they referred us to our local AlzSoc, who didn't have any info on early onset homes but referred us to the Care Quality Commission, who also didn't have any information. It doesn't seem to be information that anyone captures.

Jackie - we only know my mother-in-law should be in residential care because we have been told so by various doctors and social workers. There are various behavioural reasons why she can't continue to live alone at home as she has been, mostly to do with leaving the gas on and forgetting to feed herself.

Grommit - if we could take her in, we would. However, we have a 6-month old baby to look after, a small house and no great income and, above all that, I just don't think we're physically and emotionally up to the task of looking after her full-time. She has no other family in the UK.

Anyway, thanks again for all your responses. It's nice to feel supported and not so alone in all this.
 

Sandy

Registered User
Mar 23, 2005
6,847
Hi Daniel,

KatherineW - the AlzSoc helpline was one of the first places we tried; they referred us to our local AlzSoc, who didn't have any info on early onset homes but referred us to the Care Quality Commission, who also didn't have any information. It doesn't seem to be information that anyone captures.
My experience of using the Care Quality Commission care home search (http://www.cqc.org.uk/registeredservicesdirectory/rsquicksearch.asp) was a bit mixed.

I felt that it was a major oversight not to have a search option for under 65's (also a search option for respite services).

The only way that I was able to see the specific age restrictions for a given home was to actually read the opening pages of the inspection report PDF file (example below):

cqc_registration.jpg

Even then, that information could well be out of date if the inspection report is 1-2 years old.

In the end, the only reliable way seems to be reading through the inspection reports to check the registration details and then ringing up the homes to verify and discuss further.

There is one charity that I know of that specialises in young onset:

http://www.thecliveproject.org.uk/

They are based in Oxfordshire, but might be able to offer some helpful advice.

Take care,
 

KatherineW

Volunteer Moderator
Oct 2, 2007
12,654
London
Hi Daniel

I’m sorry that you’re having what sounds like an awful time of things, and that you seem to be coming up against so many brick walls.

KatherineW - the AlzSoc helpline was one of the first places we tried; they referred us to our local AlzSoc, who didn't have any info on early onset homes but referred us to the Care Quality Commission, who also didn't have any information. It doesn't seem to be information that anyone captures.
I’m also sorry that the advice you got via the Society wasn’t as helpful as it might have been. We are able to run searches of care homes using a database that the AS helpline purchases: this database is much more detailed than the CQC online search facility, as it enables you to add in all sorts of specific criteria – including whether a person is under or over 65, whether they present with challenging behaviour...even does the home allow pets / have an art room, etc. So, the information is captured…the main problem when it comes to care homes supporting younger people with dementia, is simply that there aren’t very many of them (as you already know).

I’ll send you a PM shortly with a bit more info on this, in any case.

I wonder if this is an issue that the Alzheimers Society could take up? Or something for a smaller, dedicated charity to campaign on or tackle in some way?
Campaigning is an important part of our work. If you’ve not yet seen it, you might want to have a look at the campaigns page on our main website: campaigns such as Putting Care Right [which aims to ensure that people with dementia and their carers have access to high quality care services] may be of interest to you. It may also be that charities such as The Clive Project, which Sandy mentioned, might be running more specific campaigns on behalf of younger people with dementia.

Best wishes and take care,

Katherine
 

DanielJOwen

Registered User
Aug 4, 2009
7
47
Barnstaple, North Devon
Thanks for those

Thanks Sandy and Katherine.

I think it's fair to say, for the reasons you detail, Sandy, that our experience with the CQC has not been mixed; it has been consistently rubbish (and that's putting it diplomatically!) Perhaps we've had a particularly bad experience, but my strong sense is that the CQC is a significant obstacle to the provision of high quality care for early onset, rather than a facilitator for it.

Katherine - I hope my comment about the Alzheimers Society helpline didn't come across as a complaint - it was not meant to be. They were sympathetic and supportive and I think referring us to the Devon branch was genuinely the most helpful option they could think of.

Thank you both for putting us onto the Clive Project, which we hadn't heard of - the website looks interesting and we will contact them too. Have also signed up for the Alzheimers Society Active Campaigners Network. I'm absolutely determined to do anything I can so that other people in our position don't have to go through what we're going through.
 

Norrms

Registered User
Feb 19, 2009
5,359
Torquay Devon
So hard

Hiya, i myself have early onset of AD at the age of 51 and have looked in this as we live in Torquay. Up to now the only one i have heard of is Moderator's Note: As per Talking Point's terms and conditions health and care providers can not be named which was mentioned earlier and when i have e mailed a few in my home town some of them didnt even bother writing back!! I wish you luch in your search and if i come accross any i promise you will be the first to know, best wishes, Norrms and family
 
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jackie place

Registered User
Aug 4, 2009
93
eccles manchester
Hi Daniel


I hope that Talking Point is useful to you I love reading what other people have to put up with and then think that I am lucky as my husband is in themiddle stages of ALZHEIMERS Good Luck let us know how yoou get on Love Jackie x x x