1. KenC

    KenC Registered User

    Mar 24, 2006
    913
    Co Durham
    Hi All,
    I always wonder why it is that MPs and people like then refuse to beleive that there is more to Dementia than Senile Dementia.
    They can not or will not take it on board that some people like myself had to retire very early loosing my job along with some of my pension. I must admit that when I was diagnosed I had no idea that there were so many variations of the Disease, let alone what it meant. I heard one MP speak in the last few weeks and not once did he mention anything other than the elderly. I have since written a letter to him to try to explain, but I suppose like the others he will not answer. We live in hope.

    Very Best Wishes

    Ken
     
  2. jaysc

    jaysc Registered User

    Mar 5, 2007
    8
    Hi Ken,

    If you don't mind me asking how old are you and what were your early signs
     
  3. KenC

    KenC Registered User

    Mar 24, 2006
    913
    Co Durham
    Hi jaysc,

    I was 56 when I was diagnosed although we think it had been there for sometime before that. I was then diagnosed as having Demetia with Lewy Bodies.
    Best Wishes

    ken
     
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,560
    Kent
    Hi Ken,
    We must all bang the drum for recognition and correct terminology, for those who develop the condition whilst under the age of 60.
    I think the confusion occurs when people talk about early onset, and mean the start of the condition, rather than the age it was diagnosed.
     
  5. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Agreed. For the past 10 years I have used 'early onset' to refer to people diagnosed under the age of 65. Did I get it wrong?:eek: :confused:
     
  6. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    If I were a conspiracy theorist I might reckon that 'they' [whoever they might be] are trying to muddy the waters so as to cover the extent to which younger people [than 65years] are having dementia.

    Using confusing terminology is a part of that.

    I was corrected at the recent conference when I used the term 'early onset' to mean the same as 'younger person with dementia'

    :confused: :confused:
     
  7. KenC

    KenC Registered User

    Mar 24, 2006
    913
    Co Durham
    Hi Bruce,
    I think you are quite right when you say that.

    Best wishes

    Ken
     
  8. cris

    cris Registered User

    Aug 23, 2006
    326
    Chelmsford
    Ken I think the MP is duty bound to reply to. Certainly if you write to your own MP he will reply.
    My wife was 48 when I first noticed signs (1996) It took somes years before I convinced our GP that there was a problem. I went private in the end to see a specialist.
    best wishes to you
    cris
     
  9. Honey

    Honey Registered User

    Dec 30, 2006
    5
    Bedfordshire
    Young Peple with Dementia

    I too have been totally frustrated with the lack of recognition given to young people with dementia and the provision available. My husband is 56 years old and in the middle stages of Alzheimers. Having not worked since 2002 his condition was diagnosed as depression and anxiety which I understand is very common. Once alzheimers was diagnosed August 2006 I encountered the first problem of medical care. Because of his age his consultant was a psychiatrist for the working age, but he knew nothing about alzheimers. The psychiatrist for the elderly who was an expert in alzheimers only dealt with the over 65year olds. I wrote to my MP who managed to get the issue resolved. Now I an coming across day care provision or /and respite care and discover that many care places are only licenced for the over 65 year olds..........so more desperate writing to my MP. I share your frustration about this, I am coming up against brick walls all the time. but like all of us we battle on. Honey
     
  10. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,560
    Kent
    Dear Honey,

    I hope you have the strength to be able to continue to battle on for your husband`s care and recognition of his condition, even though you shouldn`t have to.

    In the late 1970s, the Warnock Report advised against categorization for children with Special Educational Needs. It`s a shame some other member of the House of Lords doesn`t see fit to campaign for the rights of those, under 65, with dementia.

    I wish you well. With love
     
  11. KenC

    KenC Registered User

    Mar 24, 2006
    913
    Co Durham
    Hi all

    Its very sad but there does not seem to be much support any where in the House of Commons or the Lords for that matter. Having spoken to some of them I get the idea that they are not that interested, but I think that would change if someone in their family got the illness. Some Members of Parliament are helping the Society to try to get the problem across but it may well take time. I suppose we will just have to keep pushing until we get someone to listen, which again may take a while, but there are some people in the Society who are determind to get the point over and with a bit of luck we will succeed.


    Best Wishes
    Ken
     

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