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
    Thought you might like an update on our situation. My daughter now has a fifth social worker (not counting two temps) An assessment is in the process of being done,and a departmental meeting is being arranged. I am sure all this is happening because of the petition. and the awareness campaign! Will let you know of any further events .
    Here is my petition again if anyone would like to support it.http://petitions.number10.gov.uk/uk-ead-ld/
    I have up til the 12th of April to get as many signatures as possible. You would be doing a great service (in my opinion) to the many people with Leaning disabilities out there who do not have care and treatment for this terrible disease.


     
  2. jilljay

    jilljay Registered User

    May 22, 2005
    74
    Birmingham
    Have only four more days for my petition, then it should be winging its way to The Government for an answer.I hope it opens eyes.I hope it makes them realise how badly people with L/D and Early age dementia are treated.Can only hope something positive comes out of this appeal.Thank you all who signed my petition and if there is someone out there who hasnt and would like to,then here it is again for the last time,
    http://petitions.number10.gov.uk/uk-ead-ld/
    Once again many many thanks to all who answered on the boards and signed! (280 at this moment)

    Jill.


     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    70,170
    Kent
    Good luck Jill. I hope someone takes notice.
     
  4. kefalonia

    kefalonia Registered User

    Apr 11, 2009
    1
    Ipswich, Suffolk
    Hi.

    I am new to this forum and just read all your posts, good luck with your petition I have signed it. :) I am a 3rd student nurse in learning disabilities currently doing an report on the services provided for young people with Down syndrome and dementia. I knew there were not many services provided for this age group but none is not surprising really. I hope that the report I write will be good enough to send out to the local government in my area to help with the services provided in my local area.

    Its not just a professional issue but personal to, I have a aunty with Down syndrome, who lives with my parents and I, and getting health professionals to sit up and listen to what its like is not easy. She is now going through a series of Dementia screening tests, although a lot older than your daughter, I still feel that we dont get heard for her needs unless you really shout, or if your face fits you might get the extra care and help needed. It feels that its not what you know its who you know in some circumstances.

    Hope you get justice its about time people listen to the carers of people with learning disabilities, and i admire you for standing up and fighting for your daughter.

    Have you ever contacted MENCAP, just a thought, I have emailed them regarding my report, if I hear anything I will let you know.

    Take care xxx:)
     
  5. jilljay

    jilljay Registered User

    May 22, 2005
    74
    Birmingham
    Hi Kephalonia.
    Mencap is aware of it,and I have a local contact who is very interested,but to be honest ,the closure of day centres ,changing criteria for respite etc has taken priority,and I am as concerned about these issues as much as Early age dementia in a person with learning disabilities. Of course those two issues affects a large number of people with L/D where as my huge concern affects a very small number at this moment in time.I suspect that is because most are not tested for Dementia at an early age and so are out there but their problem is put down to having a Learning disability.
    As I am housebound a lot of the time because my daughter hates going out .. have done this petition ON the websites I thought would support me the most. This site has shown amazing interest,Carers UK and PRTC have also been excellent.(plus a private Carer site I belong to.) Cant thank everyone enough. I can already guess what the gov response will, be but hopefully at least opened their eyes to a total injustice to people with L/D and Early age Dementia. By early age dementia I mean those UNDER the age of 45!!!
    thank you so much for taking the time and trouble signing my petition, I really hope you get help and support for your Aunt!! ]
    [/COLOR][/B][/B][/B]
     
  6. jilljay

    jilljay Registered User

    May 22, 2005
    74
    Birmingham
    Possible breakthrough?

    Hi all.Just to let all those who are interested,(and I know there are a lot by the viewing numbers) know that there may be light at the end of the tunnel .Have heard that my daughter might be offered one to one help at a base still to be found.I only hope it is correct, but certainly sounds like it.Will update you on anything else I hear. lots of talking by profs going on!!
     
  7. Vonny

    Vonny Registered User

    Feb 3, 2009
    4,577
    Telford
    Hi Jilljay,

    I missed the earlier posts, it started long before I joined the forum!

    I've been reading through and just wanted to say how happy I am for you that there seems to be a light at the end of the tunnel for you and your daughter.

    Fingers crossed for you

    Vonny xx
     
  8. jilljay

    jilljay Registered User

    May 22, 2005
    74
    Birmingham
    recieved the Gov response to my E Petition.

    [Have read the response a number of times,but cant see anything positive in the answers that will help me 'now' '. Sounds as if I should see some practical improvement over the next three years? Am not happy at all about the latest suggestion from our SS service suggesting my daughter goes to ANOTHER day centre twice the size of the one I had to take her away from!! Farther away too and also is known to be very noisy and only partitioned walls!! It used to be open plan. Totally unsuitable for a young person with L/D and dementia or any older person too!!
    They have offered a one to one which i have been requesting for over a number of years. This person would be a support my daughter in a day base setting. If they only listened and used some common sense then this shocking situation wouldnt excist!! I see the cause as Social Care and Health not working together, and their rules are set in concrete with no flexability.
    I would be very grateful if someone more knowledgable than me reads the response and gives me their opinion!! Perhaps I have missed something very important?
    I have or will be repeating this info on the other two charity boards ..Carers UK and and PRTC,This site and the other two have been so supportive, I want to says thanks to you all.


    Jill .
     
  9. jilljay

    jilljay Registered User

    May 22, 2005
    74
    Birmingham
    Now in the middle of September

    My last post was in June I think, and thought you might like an update on our situation. now in our sixth year of no day care. Still no day care ..Still lots of talk. I may well have mentioned this before but health seem determined not to provide us with the hands on help in day care we need and want the SS to take responsibility! This in in the Learning disabilities section. They(the SS)have stated that they have NO facilities for a person with Very Early age Dementia and Learning disability. Health on the other hand has all that we require in skill at this moment of time!! Only thing they lack is common sense or compassion. Rules are rules and common sense is just not there!!
    We have a number of strategy's at the moment. the Dementia strategy, the older peoples strategy (my husband and myself)The Learning disability Strategy and I think a mental health strategy too. Everyone of those should include my daughter (or us) but from the little I have heard none are taking action!!Perhaps they are doing the same as my city ....just talking!!!!
    People with Down's Syndrome should be tested at the age of thirty and then in five year blocks to see if they have onset dementia,I really believe there are lots out there but just not diagnosed. By the time we get a true service I guess I will be in my dotage and not appreciate it!!!
     
  10. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    70,170
    Kent
    There are so many gaps in health and welfare Jilljay and once again it`s easier to bury heads in sand than face up to these deficits. What would happen if you were no longer able to take the responsibilty for your daughter. Have you asked them? What did they say?
    I really don`t know what to say to you.
     
  11. jilljay

    jilljay Registered User

    May 22, 2005
    74
    Birmingham
    Thanks for your concern Grannie G.If anything untoward hapened to me (and I have got heart problems), my daughter would have to go in residential care. She would go immediately into her respite home and a suitable long term place would be found for her. I want her to live in her own home with us for as long as possible,hense my wanting day care. /COLOR]
     
  12. jilljay

    jilljay Registered User

    May 22, 2005
    74
    Birmingham
    Further update

    Thought you might like a further update and a bit more positive too. A new complex for people with learning disabilities has recently opened fairly close to where we live.It looks really nice and the staff seemed very competent too.My daughter's Social worker and community nurse are visiting it next week to see if a special package of day care can be arranged.Am not getting too excited but so far the most positive thing that is happening.Will let you know the outcome.Thanks all for your wonderful support.

    Jeanette
     
  13. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    70,170
    Kent
    This looks promising Jeanette. I hope it doesn`t disappoint. :)
     
  14. jilljay

    jilljay Registered User

    May 22, 2005
    74
    Birmingham
    Another update

    The new site I talked about in my previous update hasnt worked out .they are willing ,it appears, to start a day care facility but the local council isnt responding.So now back to square one except in a worse situation. We have NO Social worker , have been waiting for a replacement for not far off two months. No community nurse, yes you have guessed it..waiting for a replacement,and we even had a person centred planner working with us ,,and you have guessed it she isnt there!!!!! My daughter's drugs have been revamped and her dementia drug (rivastigamine) has been discontinued. they are of the opinion it isnt working now.
    This bit of information also astonishes me that there are said to be seven levels of dementia and yet have been told that a person with Learning disabilities ..only three levels?? There isnt any group that specialises in our need out there to help and support us at all,and so we are totally isolated from the 'world'so to speak.
    Life really is totally unfair to all carers but I do think I can say we are part of those carers/users who are lost in the system,and have no way of getting out of it.
    Thanks for giving me the opportunity to have a big moan.Feel better after that!!!
     
  15. sunray

    sunray Registered User

    Sep 21, 2008
    1,431
    Female
    East Coast of Australia
    Hi Jeanette, we live in Australia so what I say may not be a lot of help. My mum went to a daycare that catered for just six clients a day run as outreach from one of our nursing homes. Among the group was a young Downs Syndrome L/D girl, late 30s. She attached herself firmly to my Mum who was mid 80s. They were inseparable. So much so that when Mum went into care in her Dementia Lodge the young girl *S* went into the same place to be with her friend.

    Two years later her brother moved her to a place in Sydney close to where he worked so he could see her more frequently. He had some difficulty with that as she missed my mum. I have lost touch with them now so don't know how she is getting on.

    I guess my point is that age does not make a big difference if you find some suitable companionship. See if you can find somewhere that caters for small groups with the possibility that your daughter in a smaller group may form an attachment as *S* did to my mum.

    Sue.
     
  16. jilljay

    jilljay Registered User

    May 22, 2005
    74
    Birmingham
    Thank you for your quick and thoughtful response SunRay. So long as a group was compatable and my daughter had proper care and the daycare place was suitable then I would certainly allow her to go. As it is there are no day places around and so we have this battle tryng to get one set up.We have had many 'promises' but none that materialised. Younger people in L/D dementia do need a different approach to older people,but am sure they could work together with a proper care plan and support from from carerworkers with good insight and knowledge.
    Thanks once again.

     
  17. jilljay

    jilljay Registered User

    May 22, 2005
    74
    Birmingham
    At last ..What I want to hear. The Alzheimers society are making aware big issues on Dementia, and including early age L/D at last.
    http://www.thisisjersey.com/2011/03/05/dementia-warning/
    All Health ,social care and other charities should be saying the same!!

    Well done to the new chairman of Jersey Alzheimers society!!:)

    Jeanette.
     
  18. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    I have liked the Hope Newsletter that is published by Alzheimer's Australia, and the latest one features advocacy, and it may be of interest in this section of the forum.

    It is not yet on their web page which is http://www.alzheimers.org.au/research-publications/hope-newsletter.aspx

    but I have a copy - here is an excerpt:

    and

     
  19. jilljay

    jilljay Registered User

    May 22, 2005
    74
    Birmingham
    Thank you for that Brucie.I have put it in my favourites and will keep looking until the article appears on that website.Still nothing happening here but am waiting to see if we can get interim Direct payment until a day place is found.We have been told it is unlikely we can spend it as we wish, but will have to wait and see.Also Crossroads have offered to sit with our daughter now and again when we have to go to meetings etc.Nothing happening yet though.
    thanks once again.

    Jill.
     
  20. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Jill

    if you look at the bottom right of the page for which I included a link, then you can subscribe to their newsletters, and you may get the latest one sooner, rather than later, and you will not need to remember to keep looking.
     

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.