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Is diagnosis always so difficult?

Discussion in 'Younger people with dementia and their carers' started by Deeessex, Aug 6, 2007.

  1. Deeessex

    Deeessex Registered User

    Jul 16, 2007
    36
    Essex
    Hi All
    I say this a bit tongue in cheek because of course I know it is always difficult and "only time will tell" as has been said a few times - I am also guilty of this!
    However I wonder if anyone has experienced the MEAMS test. My husband was tested by an OT and all the bits sensitive to dementia he scored well on - a problem with memory and word finding did show up.

    In a weird way being given the early onset dementia diagnosis by a consultant was reassuring in terms of it explaining away the difficulties my husband has been having over the past 4 years. Now because of this assessment my husband has retreated fully into a state of denial and now wants to drive(he had previously agreed to give up)etc.Although I don't necessarily feel he is completely unsafe to drive he is reluctant to notify DVLA and insurers of his diagnosis. It is extremely challenging to try and reason with him.

    I wonder if others have experienced this yo yo diagnosis bit or the MEAMS test. Maybe he was just having a good day but thats of no use to me in terms of trying to move forward or deal with his denial. Maybe I cant deal with that?
    Denise:confused:
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,680
    Kent
    Hello Denise,

    The answer to `Is diagnosis always so difficult?`, is yes. That and everything else about Alzheimers and dementia is always so difficult.

    There will be denial and acceptance, anger and fear. Not only will your husband be affected but you will be equally affected too.

    There is no way anyone can paint a rosy picture of dementia. It is one of the most cruel conditions anyone can be affected by.

    I am not aware of the test you asked about, I am only aware of the MMSE test. This is used widely by consultants, but those of us who are carers find the results don`t always provide an accurate indication of the stage the sufferer is at.

    I can only advise you to make the most of the good days and try not to let the bad days get to you.

    The driving is a problem for everyone. People in the early stages of Alzheimers and dementia are condidered fit to drive. When you begin to be concerned, consult your GP or consultant, either will notify Swansea for you. I know it sounds a bit sneaky, but it is justified, in my opinion, in order to keep the peace.
    And don`t try to reason with him. it won`t work.

    Please keep contact with TP. You will find it your main source of support and information.

    Sorry if I`ve been too frank.

    Take care

    Love xx
     
  3. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Denise

    I can understand your confusion. I hadn't heard of the MEAMS test, but have found some information on the web:

    http://www.nss-nrs.com/cgi-bin/WebObjects/NSS.woa/wa/Products/detail?id=1000104

    It appears to be an American test, but quite similar to the MMSE, which presumably your husband had when he was first diagnosed.

    I wouldn't worry about any discrepancies. Most people score better on some parts of the test than others, it depends on which part of the brain is affected. Loss of language is my husband's main symptom. I'd stick to the consultant's diagnosis in your place, if it needs amending he is the best person, as he has all the facts.

    Regarding driving, I'm surprised the consultant hasn't notified DVLA, ours told us he was obliged to, though that doesn't necessarily mean the loss of the licence. I think you should certainly do this. If your husband were to have and you hadn't notified them, you would be liable to a fine of £1000, and his insurance would be invalidated. Not to mention the fact that he could kill or maim either himself or someone else.

    Denial's very hard to deal with. Perhaps you could try not using the word Alzheimer's, but just referring to his memory problems? It must be so difficult for people with young onset dementia to come to terms with it, it has always been thought of as a disease of old age. Now we're seeing more and more younger people with it.

    I have huge sympathy for you.
     
  4. bel

    bel Registered User

    Apr 26, 2006
    757
    coventry
    yes diagnosis is really hard to sort out i agree

    my hubby has not been right for 10 -15 years 3 years ago he had to stop work no longer capable --even now they say probable ftd

    love belx sorry not mush help
     
  5. sheena

    sheena Registered User

    Aug 4, 2007
    22
    Sorry don't know anything about the test you talk about but have had experience with my husband about the DVLA - by law your husband has to inform them of any diagnosis e.g. diabetes, AD etc.
    My husband has protested strongly as his licence has been revoked and he is now unable to drive, although he thought he was perfectly cabable to drive. I let him write to the Consultant and G.P. to protest, write numerous e-mails and letters to the DVLA - eventually they sent him a form to complete to take a test - and that was the end of that - I told him he would have to complete the form himself (as advised by the Consultant) as that was part of the assessment and we haven't heard another word about it - ensure he does it all himself don't help - which I might add is very hard - tough love! Please remember if he is driving it is against the law if he hasn't notified them of his diagnosis and also his insurance company.
     
  6. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi sheena

    that is such a great solution.

    Very hard on both the person not to be helped and the carer not to help, but if that is difficult, just think of the challenges of driving these days, and the consequences of not being in control.

    a great reply - thanks.
     
  7. zebb37

    zebb37 Registered User

    Aug 12, 2007
    31
    salisbury
    my wife (52) went through a year of tests before being diagnosed with early onset. she was and is constantly upset that her consultant told her she may no longer drive- she feels that this has completely removed all her independance from her.

    not that she could drive as these days it's enough for her to walk to the shops. not that she knows how to pay for anything anymore.
     
  8. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi zebb37, welcome to TP. It must be so upsetting for you and your wife, she is so young to be diagnosed.

    The driving issue is one that causes so much pain, you're right, it's a morale thing, being told you can't do something you've done for years without problem.

    Please stay with us, you'll find lots of support.

    Best wishes,
     
  9. zebb37

    zebb37 Registered User

    Aug 12, 2007
    31
    salisbury
    ty skye. i am sure that i will
     
  10. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,680
    Kent
    Hello zebb,

    I`m so sorry your wife is yet another who has been diagnosed at such an early age. It is frightening how many younger people are affected.

    Please keep in contact with Tp. There are a lot of carers of young onset sufferers as members and I`m sure you`ll be well supported.

    It doesn`t take the pain away, but it does help to share.

    Love xx
     
  11. Eeyore

    Eeyore Registered User

    Jun 27, 2006
    2
    Salisbury
    Hi Denise,

    I have used the MEAMS test with people, and as an assessment tool, it can be very helpful - giving information on areas which are affected. Its obviously not possible for me to comment on the findings, but I would like to reassure you that the results of the test can only show current difficulties and are there to give guidance. They would be affected by time of day / exhaustion or otherwise of the person / distractions etc. Unfortunately I think we know so little about the brain, that guidance is all we can hope for! This is little solace for you though, and the results of the test would usually be looked at in conjunction with event history etc. After all, we would all achieve tasks differently if there were no distractions etc, and the world you live in at home undoubtedly has more going on it than there was during the assessment!

    When you have had your meetings with your consultant, they have used information you have provided, history of events and so on, along with presentation etc to make a diagnosis. From this decisions have been made (DVLA etc). It must be incredibly frustrating for your husband if he then feels that a definitive test has been carried out. I wonder if you are able to still liaise with the OT? If you are, they may be able to discuss the findings with him and explain the extent of this tools capabilities.

    The decision regarding driving is one which may be worth considering almost as a separate issue - theres a good leaflet on this: https://www.alzheimers.org.uk/After_diagnosis/PDF/439__driving.pdf
    If your husband wants to consider driving, then a assessment from one of the centres (listed at the end of the leaflet) would be worthwhile - they would give reassurance to both of you if the decision is that perceptual skills etc are currently unaffected - and the DVLA would be pleased to have this confirmation. Equally if the outcome is the worst - that driving is not possible safely, then maybe the process of review will assist with the coming to terms. If nothing else, its better to be able to 'blame' a professional for concluding that its not safe than it being 'your fault'?!! :eek: Losing licenses can cause such heartache for everyone that its probably a last resort really, and if the professional can be blamed, then anger is at least directed away from you!

    I am not sure if I have been of any help. :eek: Dealing with the rollercoaster of denial, hope and changing events is emotionally exhausting!
     

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