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which type of dementia????

Discussion in 'Younger people with dementia and their carers' started by zed, Apr 7, 2006.

  1. zed

    zed Registered User

    Jul 25, 2005

    My mum was diagnosed with dementia nearly 2 years ago, aged 59. First we were told Alzheimer's, but when we were sent to her local Alzheimer's Disease Treatment Centre we were told catagorically that she didn't have Alzheimer's so she couldn't have the medication, but she had Frontal Lobe Dementia (Picks Disease). Then we were told it might be vascular dementia. Then we were told she would be discharged from the psychiatrist's care, as there was nothing he could do, and the "diagnosis didn't matter anyway". We begged to be referred to the National Hospital of Neurology to see a neurologist, they are specialists in Picks Disease. But the psychiatrist refused.

    We went back to the GP who referred her to a neurologist, a really great doctor, who now says she has Alzheimer's. And a year and a half after being refused Aricept, she is on it. However, she has declined quite a bit, so we don't know now if the aricept will work.

    Grrrrr, I am so angry. She should have been given the chance with aricept a year and a half ago. I know if I write and complain to the Alzheimer's Disease Treatment Centre, they will just say it is hard to diagnose blah blah blah. But they were so unhelpful and rubbish there anyway, there was a huge delay on getting her diagnosis as they lost her scan, and then the nurse called me and said "your mum might not have dementia, it could be another cause of the memory loss" but at the same time the doctor was writing a letter with a dignosis of Frontal Lobe dementia, so the nurse was getting my hopes up over nothing.
  2. Margarita

    Margarita Registered User

    Feb 17, 2006
    Gosh I do feel for you, your emotion must have been up & down like a yo ,yo
  3. twink

    twink Registered User

    Oct 28, 2005
    Cambridgeshire UK
    which type

    I kept on asking which type of dementia Steve had (he's 55) and I've not had an answer yet. My support worker who is the only person we ever see really just waves a hand and says "oh, there are 53 different types, do you really want to know" and I say YES but it's got me nowhere. she said last time she was here, she wasn't sure it was Alzheimer's, it is some sort of dementia but might not be AD. She isn't qualified or anything, she is a support worker but really lovely and very helpful with filling in forms. He did have a brain scan and we were told he had had a bleed at the right side of the brain but that's all I know and he was diagnosed last August. We saw the psychiatrist in January and we don't even have another appointment so I'm hoping one comes through, if it hasn't by about June, I will ring up and ask for one. He's on 3mg Exelon twice a day. Every few weeks he gets a really bad headache and goes to bed but I don't know if that's connected or not.

  4. jc141265

    jc141265 Registered User

    Sep 16, 2005
    Just for the information of anyone who isn't aware...alzheimer's can never be truly diagnosed until after death - i.e. by autopsy/ Until then, its an educated guess only.

    Whilst our loved ones remain alive, although they may be diagnosed with alzheimers, this diagnosis comes only from a process of elimination, i.e. it doesn't appear to be anything else. I am unsure if the other dementias are the same as Alzheimers but I am guessing they are as my family too has suffered the frustration of not knowing for sure what kind of dementia Dad has....he doesn't seem to fit into any of the categories perfectly...and then that just makes you worry that he's been misdiagnosed, that there may have been some way to cure him had he got the right diagnosis, some way to slow things down, you wonder if they medications he was put on, may have made things worse and so on and so forth.

    What can I say, the whole thing, like everything else about this disease sucks. If it is any consolation, and I know it won't be, even though Dad has been on Aricept pretty much from day one, there is no knowing if it really did anything...would his disease have progressed faster if he had not taken it?

    A really horrible thing to say, but sometimes now I often think that perhaps it would have been better if he didn't take it....did we just prolong the agony of it all, by trying to save my father??? Before everyone is horrified by such a statement I will add here, that had we had the choice again, most definetly we would have done the same, anything in the hopes that we could keep him with us longer and keep him as well as possible in case a cure or better medication came along, anything in the hopes of saving him. Nonetheless, although its a sad and bitter thought, I can't help wondering.
  5. twink

    twink Registered User

    Oct 28, 2005
    Cambridgeshire UK
    which type

    Hi Nat,

    I do agree with everything you say and I had completely forgotten, I was told that no-one knows which type of dementia someone has until death and they maybe do an autopsy. I've often wondered myself ,what if we didn't start these drugs, would he be much worse by now or have they really made a difference, is it prolonging it. So many questions.

  6. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
  7. Amy

    Amy Registered User

    Jan 4, 2006
    Norman, we haven't had aricept, I noticed problems with mum's short term memory 15 years ago. Seems to me it takes as long as it takes. We just have to keep journeying alongside.
    Love Amy
  8. connie

    connie Registered User

    Mar 7, 2004
    Hello again Nat, have to agree with soo much you have said especially:

    What can I say, the whole thing, like everything else about this disease sucks. If it is any consolation, and I know it won't be, even though Dad has been on Aricept pretty much from day one, there is no knowing if it really did anything...would his disease have progressed faster if he had not taken it?

    Again, if we had to go with this experience once more, we would repeat the ourselves, but to what avail. Whose quality are we extending.?. Lionel has no idea what is happening from day to day. His memories I supply (with prompts)

    He was diagnosed with AD. Over the years Lewy Body, and then Picks have been mentioned. I really don't care. I can only assist him to have the best quality of life available. Hate this life, but it is "his life" so I have to live it.

    Look after yourselves, love
  9. jarnee

    jarnee Registered User

    Mar 18, 2006
    Dad's on aracept and has been since diagnosis about 6 years ago

    I, too, have wondered if we are just prolonging it all.

    I love him to bits, and, for now I'm just happy when he's happy....I'll cross the other bridges later. I don't think we can afford regrets or "what ifs", so long as we do our best and do it with love there's no need for either.

    I have learned on this thread about "which type of AD" ....I didn't know you can't be sure....must read up on this.

    Hey ho...homework for the Bank Holiday weekend ;)

  10. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    I think of it in this way:

    We all have a span of life, whether or not we have dementia, cancer etc.

    Medications like Aricept do not - as far as I am aware - have any effect at all on the length of the life span. what they do is to try and maintain cognitive ability for as long as possible. This hopefully results in a better quality of life for the person with dementia, and a better time for carers, family, etc. It also may put off the day when a care home becomes a possibility, and saves everyone - NHS and social services included - a bin load of care funding.

    That's why Nice has it so wrong.

    In enabling our loved ones to have whatever medications, whatever care plans, whatever visits etc, it is intended to make the time they have that much better for them, and through that, for everyone else. And to make the time when they are at their worst, as short as possible.

    WE are not prolonging anything though, arguably, if we do not have the medications prescribed, we ARE prolonging the worst part of the dementia - that part where the speech, recognition, mobility etc have all gone.

    Maybe someone knows of research that has looked at dementia patients who have simply been left without all these things, and compared their lives in terms of length and quality, to those who have had interventions.

    ...just my thoughts, of course
  11. jarnee

    jarnee Registered User

    Mar 18, 2006
    Thanks, Brucie. That way of looking at it really helps. I treasure the happy times with dad. I will make the most of them....I guess I'm just scared of what's to come for him, mainly, but I must admit, I'm scared for me, too. I know it will break my heart to see the man I love sooooooo dearly deteriorate.

    NOT GOING TO THINK ABOUT IT !!!!!!! :eek: :eek:

    Thanks for the reality check, Brucie :)
  12. susieb

    susieb Registered User

    Apr 16, 2006
    "WE are not prolonging anything though"

    Sorry don't know how to quote from Brucie's message - but thank you for that - will help me sleep at night.
  13. Angel

    Angel Registered User

    Apr 24, 2006
    Prolonging life with aricept or not?

    Sometimes now I think that perhaps it is better to let nature take its course to spare me the prolonged agony of seeing my mother with this hellish disease. My 4siblings think so, but I have been my mother's main carer and now main visitor to her home. When the disease is diagnosed it is natural to do anything to help our parent or spouse, so of course, we ask for aricept or similar. The actual practicality of chasing up doctors, seeking advice and asking for medication helped me deal with the tragic situation, although very wearing, as I felt I was doing something at least to delay the tears and 'bereavemnent' for the person I once knew. The slow process of getting medication, care in my mother's home and now the move last year to a home, has allowed me to 'grieve' in stages. Also I wanted to have the mother I knew around a bit longer, so you live in hope. She did stay in her flat for another 1 1/2 years which was great, although it was tiring for me. She has now come off aricept at our instigation, as it made her restless and was getting a bit aggressive at times, apart from making her nose run a lot! The drug seems to stimulate everything. After another few months she was put on quietapine last week to help lessen her agitation and anger at times. When she is with us, I do not see any aggression (chinese burns, slapping). At her home it's as though she is back at school as a five year old fighting her pitch and dealing in her own way with some of the indignities with which she is presented. It distresses me to hear about these bouts of aggression and I know it can only get worse. When the phone rings, I worry that it might be the home. As Christ said, in his suffering 'Let this cup passeth...'

    Today at a family gathering it was lovely to see bits of our old mother though confused at times, and she made my day when she said to one of my sisters, referring to me, 'She never says a bad word about anyone'.

  14. bel

    bel Registered User

    Apr 26, 2006
    lack of proper diagnosis

    i am very new to talking point
    but understand where you are coming from
    it is so frustrating to say the least
    i wish i could help but i am sure you are in the right place to get support
    love bel x

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