1. gerrie ley

    gerrie ley Registered User

    Apr 10, 2006
    83
    bradford yorkshire
    Good afternoon friends my wife Mollie was diagnosed alzheimers four and a half years ago.Just lately some of our family and me included have begun to question the diagnosis.Mollie can remember things if she chooses for instance we havent had our pills there are many more examples.She has become the most disruptive person I have ever known.She always interupts if I am on the phone or talking to someone or trying to have forty winks. She stands in doorways when I want to pass through. Whereas she used to be very house proud and hygienic she now wont lift a finger and she is dirty with terrible habits.Why I am doubting alzheimers she used to bang her head very regular opening kitchen cupboard doors bending down and standing up underneath the door.She also had a bad fall on ice a few years ago and was almost knocked out.The way she was diagnosed was by routine questions only. The doctor has only called four times in four years and his advise has been nil. I phoned him this morning and his secretary said she would get him to phone when he came out of a meeting its now 3.15 and I am still waiting I was wondering if any of my good friends here had any experience with my problem
     
  2. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Gerrie

    Have you read this factsheet?

    http://www.alzheimers.org.uk/factsheet/404

    My husband John was diagnosed as AD, and four years later the diagnosis was changed to PPA, which is a form of FTD

    It's very hard to get an accurate diagnosis in the early stages, and as AD is the most common form of dementia, that's the label that's most often used. But other members have also had the diagnosis changed at a later stage.

    I would be asking the GP for a referral to a consultant for a review.
     
  3. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Hi Gerrie. Whilst you have every right to question the diagnosis if you wish, memory is only a very small part of the dementia illnesses.

    You have just described someone with some form of the illness.
    Was Mollie prescribed any medication when she was diagnosed?
    Has she had a 'memory' test or any other checkup recently?

    Please let us know how you get on if you take the matter further.
     
  4. gerrie ley

    gerrie ley Registered User

    Apr 10, 2006
    83
    bradford yorkshire
    mollie

    Nice to speak to you again Hazel thanks for your advice I will look at the fact sheet now XX
     
  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,850
    Kent
    Hello Gerrie.

    Perhaps it`s a different form of dementia your wife has. Whatever form, she does seem to have been neglected by her doctor.
    My husband has a 4 monthly check up. It is simply a check up, nothing more, but at least I feel he is being watched and if something was available to help him it would be provided.
     
  6. gerrie ley

    gerrie ley Registered User

    Apr 10, 2006
    83
    bradford yorkshire
    Mollie

    Hi Connie nice to see you she was prescribed Aricept and hasnt been examined since
     
  7. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    That's not good enough, Gerrie. The guidelines say that anyone on dementia medication should have at least a six-monthly review -- though lots of areas now only do it annually.

    You need to demand to see a consultant.
     
  8. gerrie ley

    gerrie ley Registered User

    Apr 10, 2006
    83
    bradford yorkshire
    mollie

    Thanks for all your replies. The outcome is the doctors secretary phoned at 4pm to say the doctor would rather come to see us a week on Wednesday so we will have to see what he has to say.Mean while I will do some more homework and be prepared for the meeting I will keep in touch and I will keep a watch on this thread
     
  9. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Thanks for the update on Mollie.

    Will be interested to learn how Wednesday week goes.

    Stay strong now, love n'hugs
     
  10. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    Gerrie - one thing to bear in mind. Do you think the aricept is helping? Because if so, you probably should be cautious about suggesting it might not be AD. If they decided it was another form of dementia then they might stop the aricept. Aricept is prescribed in other countries for other dementias but not in the UK, so it might be helping even if it turned out not to be AD.
     
  11. hendy

    hendy Registered User

    Feb 20, 2008
    506
    West Yorkshire
    Hi Gerrie
    I am sorry your Mollie seems to be in a fix. You have lots of questions which certainly deserve answering thoroughly. I can only comment from my own experience of Dads Vas. Dem. He has been ill for 5 years and has been 'under' a consultant for most of that time. When he was cared for by a gp, well the wrong medication was given without a second thought on two occasions.
    So you can probably guess what I think about GP based care!!

    Right now my dad is hospital and has been referred to another consultant for further investigations as his presentation has changed over time. My dads original diagnosis was confirmed with results from a brain scan which showed brain damage. So it is clear that he has dementia, but right now they are trying to find out what kind.Possibly having to have more CT scans etc. Jennifer has raised a very valid point about medication. My Dad has never been offered any of the anti-alzheimer drugs, because they are not licensed for use in other dementias.

    As I understand the situation, patients are entitled to a second opinion, if you feel your questions and concerns have not been fully investigated or explained. I am surprised that Mollie has not been referred to a consultant before now, but perhaps this is a standard way of treating patients suspected of having dementia?
    I hope you get some answers soon
    take care
    hendy
     
  12. gerrie ley

    gerrie ley Registered User

    Apr 10, 2006
    83
    bradford yorkshire
    Hi Hazel I have looked at fact sheet 404 it describes Mollie I have printed it out and will show it to Dr Finlayson next Wednesday thanks ever so much for your help
     
  13. gerrie ley

    gerrie ley Registered User

    Apr 10, 2006
    83
    bradford yorkshire
    Goodmorning I dont know if Aricept is helping or not as she has been on it since day one the only way to find out is to stop giving her it and that could be like a death sentence so what do I do thanks for your advice though
     
  14. gerrie ley

    gerrie ley Registered User

    Apr 10, 2006
    83
    bradford yorkshire
    Hi thanks for your observations I will get to the bottom of this on Wednesday and I will open a new thread to let you all know how I have got on You have all been helpfull and with the advise from sheet 404 it has given me a platform to work from
     
  15. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Gerrie, I don't think it's inevitable that Mollie would be taken off medication. I believe that if someone is on meds, they can continue, if the consultant agrees, in spite of NICE guidelines.

    John was prescribed Reminyl from day 1, and after his diagnosis was changed he was kept on it, because it seemed to be working. It worked for 7 years for him.

    Ask the consultant.
     
  16. Nebiroth

    Nebiroth Registered User

    Aug 20, 2006
    3,511
    Just a couple of comments.

    First diagnosis of dementia is very difficult. Particularly Alzheimers, there is no definitive physical test for this, so doctors have to rely on questioning the patient and those who know him/her. This usually includes the MMSE test.

    Aricept is only licensed for Alzheimer's Disease, at least in England.

    If the patient is already receiving the drug, then they will not be affected by the new NICE guidelines. It will not be withdrawn even if they don't meet the new criteria. This only affects people newly diagnosed since the new guidelines came into force.

    THis being the case, a drug will only be withdrawn if the person who prescribed it feels that there is no longer any benefit from giving it. As it is very difficult to tell whether someone is actually getting benefit from it - the only way to tell is to withdraw it and see what happens - it is quite usual to keep on giving the drug under "benefit of doubt". Quite often the prescriber will ask carers about their views.
     
  17. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    #17 jenniferpa, Mar 26, 2008
    Last edited: Mar 26, 2008
    That good news (about the drug not being withdrawn) only, without wishing to be a nervous nellie, I'm not sure it's quite the same situation. One thing for the drug not to be withdrawn due to changes in the NICE guidelines but another thing entirely if the actual diagnosis is changed, surely? I mean to say - NICE guideline relate to the treatment of specific illnessess: if you didn't have the illness the guidelines wouldn't apply to you nor would the prescribing advice. Hopefully they wouldn't because as has been pointed out, it's extremely difficult to diagnose AD with 100% certainty, but if they did come up with an entirely different diagnosis might it not be a situation where aricept was actually counter-indicated?
     
  18. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Yes, but Mollie has been on it for four years with no adverse effects, so it's unlikely the contra-indications would apply.

    Consultants are allowed 'variances', provided they can justify them, and I'd think four years would be sufficient justification.

    Certainly it was in John's case.
     
  19. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    Good point Hazel. :)
     

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