Very Early age dementia in Down's syndrome.

Discussion in 'Younger people with dementia and their carers' started by jilljay, Aug 15, 2007.

  1. jilljay

    jilljay Registered User

    May 22, 2005
    74
    Birmingham
    At long last it has been accepted thart NICE discriminated against people with L/D
    So what is the government going to do about it?
    My daughter was only 32 years old when this dreaded disease hit her (and us)
    since then (eight years ago) it has been a battle to try to get the appropriate treatment and daycare! Now the powers that be want to put her in a 'room' with old L/D people . The nearest to her age is 20 years older so we where told!!
    We have kept her at home for the last four years,and it is extremely hard to get her to go out of the house, infact ,without a set procedure ..impossible!!! Surely there should be appropriate day care for someone in early age dementia? Does anyone know of any anywhere? Their needs are totally different to the needs of older people!
    Please dont go down the line of direct payments!(Another story)
    would be very grateful to hear anything! And would especially like advice on how we should proceed!
    Take into account too that we, her parents are now O.A. Ps with our own health problems.!
    thanks for listening!!
     
  2. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Jilljay, I'm so sorry. I remember you posting before about your daughter, and wondered how you were getting on. It must be so difficult for you to cope.

    I'm sorry, I can't suggest any help for you, but I agree that there should be some. I'm sure this has been suggested before, but have you tried Princess Royal Trust?

    You're absolutely right, any help available is geared to older people, and there needs to be more provision for younger sufferers.

    I hope someone will be able to come up with more suggestions for you.

    Love,
     
  3. jilljay

    jilljay Registered User

    May 22, 2005
    74
    Birmingham
    Thanks skye

    I am very pleased to read that 42 people have read my post ,yet no one can answer any of my queries. It just shows how little is being done or known about people with L/D who also have some form of dementia. My wish is that different charities start working together,taking into account other disabilities a person with Dementia might have .(L/D obviously), but any other disabilities that person suffers from.
    If we all worked together surely it would be better for all the people we care for ..and ourselves ..as carers!
    I do thank you for your 'instant'message ..skye ,it was appreciated!
    The PRTC, which i know well,have had hosted chats ,and I have raised the subject many times!
    Everyone like you ..are very sympathetic but NO ONE has come up with any solution ,just..we will take the info back !!
    So there is talk out there, but nothing practical!!
    Will just have to keep raising the issue til something concrete is done!!
    Thank you for reading my message!
     
  4. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Jilljay, I'm so sorry. We've failed to help you, and it seems every other organisation is also failing you. What an indictment of the system!

    Please keep posting. If we can't help, at least we can provide support and companionship.

    Love,
     
  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,560
    Kent
    Dear Jilljay,

    It is terrible to think there is no help for you.

    I have a friend whose sister, now aged 50, has Downs Syndrome. My friend is a Headteacher of a Special School and has some good contacts. I have emailed her, and asked if she has any way of pointing us in the right direction.

    It`s a long shot, but I will let you know as soon as I hear. There is a possibility my friend is on holiday, but we`ll wait and see.

    Here`s hoping...........

    love xx
     
  6. jilljay

    jilljay Registered User

    May 22, 2005
    74
    Birmingham
    Thank you for your remarkably quick responses Skye and Grannie G.
    We will continue to fight for our daughter.
    If all the professionals who said they would improve the plight of L/D and Dementia do so ,will expect something to happen in the next eight Years!! Hope that is me being synical, but dont think so! By that time she will be 48 and falling into the system that excists!!(except the L/D side)
    Time will tell, but will we be here then and where will she be?
    So on we battle!!
     
  7. chip

    chip Registered User

    Jul 19, 2005
    400
    Scotland
    JILLJAY, I wish i could help i know there is nothing for younger people it just seems to be not recognised. I totaly agree its not right younger are put in with elderly. My husband used to say when he was aware " they are all oldies" It was also a problem with what they done for activities with them. Quizzes were geared to elderly it was mentioned he didnt take part in them. Then it was brought to their attention he wasn't even born when some of them would be in their 30's. I have been fighting for years to get this discrimination changed. It's coming to a head now so i will let you know how i get on. Seeing a carers advocacy tomorrow as i have a 6 page complants / errors and information for the Social Services and NHS hospital.
    I only started getting Direct Payments 18 months ago assesed for 10hrs a week
    In Feb this year ILF assesed 21hrs a week on top of direct payments making 31hrs a week. This never started
    6 months later now been told he needs 168hrs care a week
    I don't think there is a proper needs assesment in place. It seems to be guess work and up to the individual Social Worker. I am going to try and find out and try and get that changed.
    As she is young go for the direct payments but at the same time the ILF but remember to tell them to make allowances for deterioration and get this added on to it as they do not take this into it. In 4 months my husband has deteriorated rapidly and i was assesed as needing 10hrs a week ? and he only got diagnoised 2 years ago.
    In the Dementia Scotland newsletter it mentions about direct payments being used for short breaks a man with dementia got 30hrs a week care from this. The local authority gave permission for the direct payments to be used for a visit to Spain, His wife, a carer and he went. I want to know what region this was. I will be very angry if it is the same one as i live in. I just can't understand how some get everything and others have to fight to get the smallest help.
     
  8. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi jilljay

    sorry that you are having such a hard time trying to make headway.

    Just to clarify something Hazel has said
    Talking Point is not an organisation - it is simply a group of carers of loved ones who have dementia.

    As always with English, different people read things in a different way from the way the writer meant them to read. I think of failure as being through inaction or unwillingness, not through inability. [I know it can be otherwise defined]

    In the case of your thread I'd be thinking there's a difference between being unable to help and failing to help.

    The power of the forum is that the experiences of carers can illuminate the lives of others who are here.

    At one time there were few Young Onset people represented here - now there are many, and each person's story helps others. More people understand the challenges of Young Onset dementia, and more people with experience of young onset also understand the problems of other manifestations of dementia.

    Perhaps you are the first of a new constituency within Talking Point. Only by understanding the challenges of each consitutency and the possible solutions, can dementia in the round be understood and communicated to those who don't yet know.

    Sorry, bit of a waffle here.:eek:
     
  9. jilljay

    jilljay Registered User

    May 22, 2005
    74
    Birmingham
    Hi Bruce

    :) Thanks for your answer. i did understand what Skye meant, and know what you mean too Bruce.
    I hope more Carers with 'my' type of concern find this site,as ..although no practical information has been given (yet) other than direct payment/ILF, everyone who has responded has been very kind,and thoughtful.
    I thank you all for that!
    Will just carry on as we are and wait for the next battle!
     
  10. Eeyore

    Eeyore Registered User

    Jun 27, 2006
    2
    Salisbury
    Dear Jilljay,

    I am aware (that in my area) a friend of mine is working within the day service to run a group for young people - the age range is larger than ideal - 30's + (quite a scope). We were discussing this over the weekend and the challenges the group will pose - so many different needs and sadly, the resources only enable one day per week. I think you will agree with me though that this is a good step in the right direction! Once this is up and running, the first challenges to being able to grow a service have been met - something that exists is much easier to prove need for and expand!

    The scope of available services though is very dependent on area, accessibility of transport, funding etc. I know it sounds quite mad, but in another area I am aware that one family obtained support from a private day centre (ouch cost)attached to a neurospecialist residential care unit. The day centre staff were skilled in being able to maintain a stable routine environment and meet this persons needs - again no help as out of your area - but maybe worth investigating if there are any similar private resources in your area (although am sure you already have :) The day centre was not generally advertised - was really an extension of the services offered within the residential unit, but they were helpful) The funding for this would be the next challenge, but at least it may give you options!

    Good luck - keep your chin up - I know from my experience that finding services which really don't exist is incredibly frustrating :mad:
     
  11. jilljay

    jilljay Registered User

    May 22, 2005
    74
    Birmingham
    Thank you eeyore

    Hi Eeeyore ,that was very interesting and I do thank you for taking the trouble to write and give me this info.
    I should imagine ..when anyone writes, they cant tell the whole story..much too complicated!! Same with me , My daughter could go into a 'room' with other people with L/D and are frail or have dementia. We where a sort of pressure group to make that room happen,but i feel the clients in it are too old for my daughter, but we do have the choice! Do I let her go or not ??
    Do we continue to pressure the powers that be to provide suitable day care (age related) ??do I continue to keep her at home?
    There are so many questions,and i dont know the answers!!
    Nothing in our huge city for her age , and I feel there should be!!!
    they say Great Oaks from little Acorns grow, so even if they did ..like your friend ,just one day ,it would be a start!
    I am certainly not giving up on trying to get a better quality age related service ,but do need info from people who have experienced our problem and have found a away forward!
    As I said before .you are all so kind and i do appreciate it! Thankyou! :)
     
  12. jilljay

    jilljay Registered User

    May 22, 2005
    74
    Birmingham
    I started a post on here in 2007. Reporting on any progress

    Unfortunately things are worse and no input in day care at all. Of course my daughter is still deteriorating and my husband and I are still fighting, but getting nowhere fast. Have just started a 'one person' awareness campaign trying to inform anyone who should help us that people who have L/D and also a form of Early age Dementia are not catered for at all.Everything always points to an older person!
    just letting off steam and bringing you up to date with lack of support out there.:(
     
  13. Helen33

    Helen33 Registered User

    Jul 20, 2008
    14,697
    Hello Jilljay

    I just want to say that I hear you and am sorry that you are having to battle alone so to speak. I have a sister with Downs Syndrome and a husband with fronto temperal lobe dementia. My sister was suspected of having a dementia a short while ago but this turned out not to be the case. I cannot begin the imagine the turmoil, strain, stress and heartache had it been otherwise!
    I will make some enquiries at our next meeting and pose the question as to what would have been available to my sister had she been found to be suffering from a dementia.

    I was wondering just where you begin with your campaigning? Do you query places like Crossroads for example as to what they offer and whether their training covers very early onset dementia in people with Downs Syndrome?

    Very best wishes Jilljay
     
  14. jilljay

    jilljay Registered User

    May 22, 2005
    74
    Birmingham
    Thanks for your 'instant' message Helen

    I would be very interested to know what would have been available to your sister if she had been diagnosed with this horrible disease,but really glad that she didnt have it.The vast majority of people have no idea that approx 50 per cent of people with downs get some form of dementia in early age.Mostly over the age of 45 but some under that age of course.My daughter being one of those. (32 years old)
    thank you so much for caring!!
    I have contacted my MP ,our local director of social Care and Health. Written messages on PRTC and Carers UK board and am going to try and get some interest from our local newspaper but dont think they would be interested .Tried before with no luck!!Am also seriously thinking of starting a petition and already have a friend who has offered to write it for me. So fingers crossed!!
     
  15. arightcat

    arightcat Registered User

    Jan 7, 2009
    8
    York
    DS Society

    Hi Jilljay,
    I had a look at your message as I work in a university department where some research on DS is carried out. We specialise in developmental disorders, and reading and language so we are not involved in anything relevant to this. I just wondered whether the DS agencies might have anything to offer with this, and whether you have approached them about this as well. I suspect you probably have, and if so, sorry if I've asked a stupid question!

    I hope you are ok, and I'm sorry to hear of your daughter's condition. Keep fighting - I suspect this sort of care is much needed nationwide.
    Cat xx
     
  16. jilljay

    jilljay Registered User

    May 22, 2005
    74
    Birmingham
    Thank you for answering 'puss'(lol) I have the DS literature as to what should happen but of course that is just written ..nothing practical!!(but excellent of course) I just cannot think of anywhere else to contact at the moment ,but am adamant a lot more people are going to be made aware of the condition/situation and the total lack of all that is needed out there.I want them to realise we are not treated the same as 'normal' people who contact Early age Dementia,but also realise at the same time, just how devastating it is to them too.It is such a shame we cant all do battle for all,no matter what other disabilities are there..
     
  17. makalu

    makalu Registered User

    Nov 2, 2008
    72
    West Sussex
    hi, I cant give you any answers but just wanted to show support and say i feel your pain through your words for your poor daughter and the frustration you must be feeling.
    Good luck in your fight and hopefully the strength you will find here on TP will help you carry on.
    I feel the same with whats happening with my dad, WHY cant anyone give us an answer on whats happening with our loved ones?
    its such an unknown quantity, perhaps in 20 years or so things will be clearer but for now, we must carry on fighting for our rights.
    Good luck once again

    Nicky
     
  18. jilljay

    jilljay Registered User

    May 22, 2005
    74
    Birmingham
    Thanks Nicky

    Thank you for your kind message Nicky.It was appreciated. I hope to submit an E petition shortly so hope carers on here will support me.We all need support, particularly by those who understand! I am in my forty second year as a Carer so am very well aware of the vast amount of problems carers face,but have learnt over those years if we dont fight we dont get!!! We shouldnt have to, but unfortunately it is necessary!
     
  19. Deeessex

    Deeessex Registered User

    Jul 16, 2007
    36
    Essex
    Hi
    I share your concerns firstly as a professional working with people with LD and secondly as a carer for my husband with early onset dementia also. Where I work the new government strategy for Dementia services has just been started to be implemented. The overall strategy looks very good with government giving money to support the development of services - long time coming. I work in a Mental Health and LD Trust so I wondered if the Mental Health Services in your area are also responding to the NICE guidelines for dementia. Find someone with a voice on the steering group or better still offer your services as an expert carer. I am sure there will be a forum in your area as the campaign for dementia services is coming to life at long last.

    Your daughter, my clients and my husband do not fit the mould of "normal" dementia services but the needs are still there in significant numbers.
    i wish you luck and strength.
    Denise:)
     
  20. jilljay

    jilljay Registered User

    May 22, 2005
    74
    Birmingham
    [Thank you for your kind message Denise. I have set up a gov petition to try to raise more awareness.
    This is it
    http://petitions.number10.gov.uk/uk-ead-ld/
    I hope to get as many people as possible to sign it!
    I must have 200 before the gov gives a response.
    This is the first time I have done such a thing so hope everyone will bear with me if I have done something wrong.
    thank you for reading it and I hope you will sign too.
     

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