Thread Status:
Not open for further replies.
  1. Expert Q&A: Protecting a person with dementia from financial abuse - Weds 26 June, 3:30-4:30 pm

    Financial abuse can have serious consequences for a person with dementia. Find out how to protect a person with dementia from financial abuse.

    Sam, our Knowledge Officer (Legal and Welfare Rights) is our expert on this topic. She will be here to answer your questions on Wednesday 26 June between 3:30 - 4:30 pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

Why is there so little provision for younger people with dementia?

Discussion in 'Younger people with dementia and their carers' started by splatz, Apr 24, 2007.

  1. splatz

    splatz Registered User

    Jul 28, 2006
    5
    bedfordshire
    Things are getting more and more frustrating for our familly because it seems there is no suitable provision locally to care for my father (aged 61 now) who has advanced Alzheimers.

    He has been in two homes now and has spent a long time in a hospital assessmen center in between. The hospital don't want him there because he is taking up bed space and really shouldn't be staying long term in an assessment center.

    The first home he was put into sent him back to the hospital after 6 weeks because they couldn't cope with some of his aggressive behaviour.

    The second home looked after him for a few months before a couple of aggressive moments resulted in another 'service user' being injured resulted in him being sent back to the hospital again.

    Both of these homes have a licence for the under 65s with dementia. Both of these homes were very happy to take the money (CCF funding from social services), but when they don't provide the approapriate care it is very frustrating.

    While I understand that homes have a duty of care to all their 'service users', but aggression is a part of the condition. If they cannot deal with this then they shouldn't have a licence. They shouldn't be allowed to take the money then reject the 'bad ones'. Afterall this isn't my father's fault. He can't help himself.

    Mum can't care for him at home because she has to work to make ends meet. Afterall she isn't old enough to retire yet.

    So now we learn that we might have to consider sending my father to another county because there is nowhere else in Bedfordshire who can take him with his needs. How crazy is that! Social services are frustrated too - afterall it is their money that is funding his medical needs. They want to place my father locally so that my mother can visit him more easily - but with no local provision their hands are tied. it seems they are at the mercy of these homes.

    Rant over now. This is a terrible condition made worse by a system that fails to support those that need this kind of help. Is anyone else having this sort of problem? My family can't be unique?

    Steve
     
  2. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Dear Steve, your family are not unique, more's the pity. Early onset dementia is on the increase due to people livig longer.

    You hvae to ask around, shout at SW's or CPN's, anything to make yourelf heard. WRONG I know, but that is how it is. There is not enough support for people with dementia, let aone "Early onset cases"

    Let us know how you get on. My thoughts are with you.
     
  3. Grommit

    Grommit Registered User

    Apr 26, 2006
    2,127
    Doncaster
    I am just about to embark on this particular ship myself and I will keep you appraised of the outcome.
     
  4. chip

    chip Registered User

    Jul 19, 2005
    400
    Scotland
    I'm bringing this up tomorrow at the meeting as well. Even the hospital do not provide for younger people they get put with elderly. Younger suffers have different needs and they are more active enjoy different music. After all a three year old wouldn't be put with a 30 year old, and what if the place was geared for the 30year old. How would the three year old react ? with nothing to do play with. Would they sedate the three year old ? When all that may be needed is surroundings activities toys for the three year old. Person centered care is a big thing these days but its not being acted on where its needed.
     
  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,721
    Kent
    You sound so strong Chip. Keep it up.
     
  6. chip

    chip Registered User

    Jul 19, 2005
    400
    Scotland
    I dont think i'm strong. Angry more like . I always think how would i like to be treated if i was ill. I know that us carers are taken for granted. A little more help would help us and also who we care for , and to be treated right not as a second class citizen. Even Dementia suffers have feelings. HHmmmm think i will say that tomorrow.
     
  7. annesharlie

    annesharlie Registered User

    This puts your family in such an unbearable position. I think a big factor is this disease is so very rare that they just have not set up facilities to manage with younger people and their different needs.

    My father-in-law demented in his very elderly years and became very aggressive with the caregivers in the home. They would phone and complain, even called the police to have him taken to the hospital to be drugged. I was appalled, they really should have been able to manage a frustrated and angry 89 year old. Don't they realize everyone is affected differently, and this anger and violence is a symptom. You would think trained professionals could cope, I am angry on your behalf too - it is very unfair.
    Sorry, I'm in Canada, and don't know what to suggest. Perhaps I'll run up against the same problem when the time comes.

    Anne
     
  8. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,721
    Kent
    Chip.

    Keep going.............it`s amazing how articulate we become when we are fired up.
     
  9. splatz

    splatz Registered User

    Jul 28, 2006
    5
    bedfordshire
    I am attending a meeting next Tuesday with the Social Worker and a few other people to discuss what happens next with my father. The Social Worker has been great - much better than some of the others we have had over the last couple of years.

    This social worker is as frustrated as we are - there are half a dozen or so other people in his case load who are all in the same condition as my father - they all need a suitable place that will cater for their particular needs. They have all been moved from one home to the next with long stays in the hospital assessment center. Only there isn't any provision to place them all so they are waiting in limbo in the hospital unit which is far from satisfactory.

    The families of these people all know each other now only because this issue has been going on for so long.

    All we want is a place that has the experience of dealing with the needs of early onset dementia sufferers, who can give them some quality of life.

    It is just not right in this day and age. Good luck everybody. Please post any successes if you should have them.

    Steve
     
  10. Leslie

    Leslie Registered User

    Feb 27, 2007
    5
    Bedfordshire
    Unfortunately there are no suitable homes for younger people in Bedfordshire. There is a home in Milton Keynes and it has a good reputation as it has one to one care. It is also very expensive! There is a specific support group for younger people with dementia called 'The Owner's Club' which serves North & Mid Beds run by the Alzheimer's Society.

    Hope this might help and remember it's never wrong to have a moan about poor service even if it's not the British way!
     
  11. splatz

    splatz Registered User

    Jul 28, 2006
    5
    bedfordshire
    It sounds crazy for a county the size of bedfordshire not to have suitable provision, especially as there are plenty of people who would benefit.

    Did you learn this out through your experiences too?



     
  12. zed

    zed Registered User

    Jul 25, 2005
    76
    London
    I agree with everything that has been said. We are looking for a suitable day centre for my mother who is 60, the choices are either going to a dementia day centre where she'll be the only younger person, or a mental health day centre where she'll be the only one with dementia. There is a specialist early onset dementia day centre in a nearby borough, but as they are not in her borough they can't provide transport, and she would not manage in a taxi on her own.

    It makes me angry when residential homes etc can't manage people when they are "aggressive". The staff should try to uncover the reason why someone is unhappy or frustrated that causes them to be aggressive.
     
  13. Leslie

    Leslie Registered User

    Feb 27, 2007
    5
    Bedfordshire
    Dear Splatz,
    I am involved with this support group and so I get to hear all kinds of horror stories. We are looking at trying to create a DVD on 'Treating the person with Dementia with Respect', re-telling real life experiences and then sending it to all the professional bodies. The intention being that they might start to see that the person is still a person with feelings even though they have dementia.

    Kind Regards Leslie.
     
  14. Grommit

    Grommit Registered User

    Apr 26, 2006
    2,127
    Doncaster
    A visit to our local day care centre has been arranged by the Soc.Serv for next Tuesday. i am allowed to stay with jena for the first hour or so and then I shall be asked to leave her.

    Just wondering where I will get the strength from to do that.
     
  15. candi

    candi Registered User

    May 6, 2007
    32
    norwich norfolk
    i have been reading the threads on here and we have now been placed in the situation of finding a care home (EMI with nursing) for my mum. at the moment she is in a mental health dementia assessment unit but i have just found out she will be moved to acute hospital neurologocal bed (she has dementia caused by CJD) and we are expected to find her a placement from there, trouble is i do not want her stuck in a acute hospital ward until something is found. we wanted the time to look round at homes properly. we are having trouble finding a home which will take younger people with dementia does anyone have experience in looking for these types pf care homes in the norwich/ south norfolk area any help would be appreciated. i also did'nt realise that homes do their own assessment and do'nt have to take residents if they do'nt want to. i just feel lost with trying to find a suitable home that will be easy for the family to visit as i know where ever mum goes dad will be there all the time, family consideration does'nt seem to be taken into account as i made clear i was not happy with mum being moved to the acute unit as she is settled where she is, we were told it would be two days for tests and now it's not. we have tried to contact the SW for help as he did'nt contact us when we were told he would but he's out of the office on a course! we just want her to be settled somewhere that is suitable, with CJD the course of the disease can be very quick i want to spend however long with have with mum with her, not running around getting nowhere. does anyone have any idea long funding takes to sort out? as she should be funded under section 117 aftercare sorry for all the questions and moans, now going to look for a brick wall to bang my head against!! thank you candi
     
  16. scarlett

    scarlett Registered User

    May 31, 2007
    22
    Derby
    aggression

    My mum was diagnosed in 2003 age 56 but scans showed onset was 3 of 4 years earlier. mum was a single parent and i am only child with no other family. My maternal grandmother also had it. Suspicion and paranoia which led to both physical and verbal aggression from my mum, tho thankfully not towards me (usually) but the drug QUETIAPINE has worked wonders for my mum (and staff)
    It frees her from paranoia etc but does not sedate her. Its as if her mind is completely absorbed by suspicions that there is no room for anything else but with it she is able to relax and not worry. every so often the ideas return and we know she needs an increase. I hope someone may find this useful
     
  17. Megan

    Megan Registered User

    Sep 10, 2005
    16
    Hampshire
    Going in the same direction

    Sorry to hear of your plight. I am in a similar position at the moment, my husband of 58 is in an assessment unit and has been there 5 weeks. Had a visit from the Social Worker saying she was going to start looking at homes for Colin. She came up with only two possibles, then I had a phone call from her saying that she'd visited Colin in the unit and that she'd spoken to the staff and as he'd become a little aggressive they'd put finding a home on hold. So now I have no idea how long he'll be in the assessment ward and where he'll eventually go. She did mention some places outside of our area which I really don't want to happen. This seems to be a common theme with younger dementia patients. Hope your situation resolves itself soon. Let everyone know how we get on later.
     
  18. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    On the business of [lack of] provision for younger people, I was at the Alzheimer's Society HQ yesterday and, as you enter reception, you are faced with a large display of pictures of people who apparently have dementia.

    Underneath each is a paragraph about them.

    One paragraph mentions that people of all ages get dementia, yet no picture on the wall features anyone in the young onset age range.
     
Thread Status:
Not open for further replies.

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.