1. Our next Q&A session is on the topic of Christmas and dementia.This time we want our Q&A to involve our resident experts, you! Share tips and advice on navigating Christmas here in this thread.

    Pop by and post your questions or if you prefer you can email your question to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.
  1. sheena

    sheena Registered User

    Aug 4, 2007
    22
    I have read one or two posts recently where Aricept is mentioned - would be interested to hear if people feel there is a majority it helps or a minority. I am in the position that my husband has a prescription in his hand and could have it but won't take it (because he is well just now and doesn't have any of the side effects - so why would he make himself feel unwell) - any thoughts:confused:
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,884
    Kent
    Dear Sheena,

    When my husband was prescribed Aricept, I felt so grateful, as I`d heard so many horror stories about Post Code lotteries, and there we were, getting a prescription withoput even having to ask for it.

    It was not for him, sadly. It did have dramatic side effects, in the form of visual and aural hallucinations, so he had to stop taking it.

    But the peole on the Forum who have had benefit from it are so grateful for the extension to their quality of life, I would never speak against it. It just was not for us.

    The only way you will know how good or bad it is for your husband is if he gives it a trial. I doubt he would have been prescribed it if the consultant hadn`t thought the time is right.

    But the final decision has to be with your husband.

    Please let us know what he decides to do, and if he does take it, whether it helps.

    Love xx
     
  3. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Sheena, I agree with Sylvia. If your husband has the chance to try the drug, he should give it a try. He may have side-effects, in which case he will have to stop taking it.

    On the other hand, it could make a huge difference to the progression of the disease. I think everyone except NICE agrees that the earlier treatment is started, the more effective it is. My husband is on Reminyl, not Aricept, but the effectsare similar. He started it on diagnosis, and it gave us six good years before the real decline started.

    Do give it a try.

    Love,
     
  4. zebb37

    zebb37 Registered User

    Aug 12, 2007
    31
    salisbury
    my wife is on aricept as i've mentioned elsewhere. she has had no side effects (thank god) and the initial effects were quite dramatic.

    I don't know if it's me though but i'm not sure she's benefiting quite as much as she was.

    time will tell there when she goes through her 6 week long psyche tests again in a couple of months - not looking forward to this. those 3 hr, once a week sessions really took it out of her last time
     
  5. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Lionel went on to Exelon as soon as he was officially diagnosed. I truely believe that they helped in holding back symptons for a time, or maybe slowed things down, who knows.

    His consultant said then, 6 years ago, that 12/18 months was the maximum time the drug was expected to be effective for, although he has never stopped taking same.

    My query was:
    never come across this before although he stayed with same consultant and then CPN throughout. Information no use to us now, but just wondered who else has/had this level of monitoring.

    Thanks,
     
  6. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    We've never had anything like that.

    In fact, John hasn't even had the mmse test for the last three years, because of his lack of language. They just go on presentation, and what I say.
     
  7. annesharlie

    annesharlie Registered User

    It seems like every case is so different - do give it a try, what can you lose? Ron was prescribed the Arisept and started with it about two months ago. It took a while to initially adjust to the 5 mg ( upset tummy, dizziness) and after a month or so he was used to it and he felt it really helped, though the rest of us couldn't see a change... Then on three occasions he tried to up the dose to the recommended 10 mg per day, but he really felt so unwell that he had to take to his bed for the day. It was hopeless, and we have now cut him down to 5 mg, and he's cut the pill in half to spread the dose through the 24 hours. I also have been told it only really works for 2 years, and doesn't increase life expectancy at all, but can ease symptoms. The plan is to do a 6 month trial and then re- assess.
     
  8. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,884
    Kent
    This is news to me too.

    My husband has a consultation with a geriatric psychiatrist every 4 months. He talks to him, and to me, reads my diary and checks his score on the MMSE test.

    When we took my mother to a neurologist, he did say she could have further tests, to gain more insight into her condition, but as there was nothing [at that time] to delay progression, he advised against them.

    He said his mother had Alzheimers and the tests were stressful and unpleasant.
     
  9. Linda Mc

    Linda Mc Registered User

    Jul 3, 2005
    1,881
    Nr Mold
    My husband had a wonderful positive response to Aricept it made a tremendous difference to him. He had no side effects.

    We both feel it has given us extra quality time together and although it does start to lose effect (in his case after three years) well worth it.

    Although it is not suitable for everyone I do feel people should at least try.

    Whatever you decide good luck.

    Linda x
     
  10. zebb37

    zebb37 Registered User

    Aug 12, 2007
    31
    salisbury
    i think because of my wife's age first the local memory clinic and then her first consultant wanted a thorough pysche examination before diagnosis.

    it was then felt that she should be re-evaluated on her psyche tests six months later.

    how much of this is down to the psyche team or consultant i'm not sure.

    certainly her progression to stage 5 seems to have been exceedingly fast.

    maybe it's because southampton hospital is also a university hospital.

    i don't know. i thought that this was the way it was always done:confused:
     
  11. louise@weinprop

    louise@weinprop Registered User

    May 12, 2005
    22
    My husband who is now 61 has been on Aricept for 3 years and the only side-effect has been diarrhoea, which I control with Immodium. Has it benifited him - who knows - I only know that even though here in South Africa it is exceptionally expensive and the Medical Aid will not pay for it, I am loathe to experiment just in case he gets worse quicker than he would whilst taking the drug.
    I have found however that since I have started him on an anti-depressant as well, he is far easier to manage. As far as his neurologist is concerned, he just repeats the drug as I refuse to allow him to go through all those tests which destroys his self confidence even more.
     
  12. Petrus

    Petrus Registered User

    Aug 7, 2007
    61
    Northumberland
    Testing

    Our history of diagnosis and monitoring of my wife (J.) is exemplary, based on my reading of the recent National Audit Office report:

    May 2006: visit GP with concern that J. has thyroid problem (as her mother did). GP (a trainee - our practice always has 2 or 3 working) runs physical checks, takes blood sample and asks us to make special appointment for 2 days hence. Completes a shortened mini mental state examination (MMSE); tells us sympathetically he fears dementia and will arrange for J. to see a specialist consultant (old age psychiatrist).

    June 2006: Consultant makes appointment for CT scan and appointment to visit us at home one week later. During home visit consultant conducts MMSE and Addenbrookes Test. (I had also provided her with written observations from our son and daughter-in-law, my sister and brother-in-law and me). She discusses results and gives probable diagnosis of early and rapid (6-9 months since start) on-set AD. She also set out, with approximate timings, what will be done in coming weeks to check diagnosis, suitability of medication, weekly session in memory clinic and social services support (importantly organising a care manager). She also recommends a book for me to read and provides contact information for local Alzheimer's Society.

    July 2006: SPECT and MRI scans. Attendance at memory clinic. New consultation at memory clinic with confirmation of diagnosis and recommendation to start Aricept - 5 mg. for 1 month and, if no side effects 10 mg. (there were no side-effects at all).

    August - October 2006: 3 Home visits by psychiatrist colleague of consultant to assess J.'s writing (she is published author); painting and embroidery (she has held exhibitions and won prizes).

    September - November 2006: Neuropsychological testing - 4 home visits each of 1-2 hours (I suspect this equates to Zebb37's "6 week long psyche tests"). The purpose of the testing was to determine whether or not there were congition functions that were less damaged and which could be used to help keep other functions operational as long as possible. The tests involved Weshler Test of Adult Reading (to help with the estimate of pre-morbid ability - very high); Weshler Adult Intelligence Scale to determine intellectual functioning; Adult Memory and Information Processing Battery to determine memory functioning; Trail Making Test to determine executive functioning. Sadly the results showed very significant and consistent loss of performance (40 - 60%) with the best being verbal tasks. Psychiatrist commented that story-telling was far above what would be expected (Even in May, J. could no longer write with correct syntax and only with childish vocabulary)

    November 2006: I requested a second opinion through the GP who liaised with the consultant to minimise need to re-run tests and to ensure that she did not have concerns that I was dissatisfied (quite the reverse). The consultant recommended a leading specialist (psychiatrist) who runs a clinic in Newcastle upon Tyne and within 3 weeks we saw him together with his psychologist colleague. J. was examined for over 2 hours including MMSE and Addenbrookes tests (same scores as in June). Diagnosis was confirmed. Three points made: 1) "There is nothing that can be done for J. except loving care". Social services will be of more value to us than medical resources; 2) Aricept has not had a significant effect, but since there are no side-effects might as well continue. However, we should expect to see a consistent, gradual decline followed, at some probably not too distant point, by speedy, significant worsening 3) it is very unlikely that the neuropsychological tests will show any significant variation - if they do it would be worth re-visiting the clinic (at this time the results noted above were not available).

    February 2007: Meeting with consultant with shortened MMSE test together with reports from memory clinic, social services and me. Agreement of consistent, gradual decline; memory clinic no longer of value; will arrange for social services to take J. out 2*3 hrs per week to further assess her condition. Although prognosis is very difficult (far more difficult than with cancer) I should plan on the basis that J. will need specialist care starting winter 2007/08; social services care manager will work with me on the options.

    July 2007: Shortened MMSE test. J. is now officially severely demented. Her verbal skills are far above what would be expected - she is still able to use stock phrases, sentences and stories to react to conversation. These are not always appropriate or clear and are often repeated but the level of conversation is remarkable. Recommend to stay on Aricept (since no side effects and it might be helping); fuller consultation needed in 3 (rather than 6) months. prognosis on when specialist care will be needed remains most likely (but you can never tell); if J. expected to remain at home beyond early 2008, I should arrange for 1, ideally 2, weeks respite so as to ensure I do not start to suffer (and respite does not include doing extra of my voluntary work with UNICEF or the Church).

    In parallel with this there has been an integrated programme with social services.
     
  13. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,154
    Toronto, Canada
    My mother used the Aricept for several years and I think it was very effective. She was then switched to Ebixa as the disease progressed, which also had very positive results.

    As others are saying, I think you should give it a try of at least two or three weeks. Side effects can settle down. My mother didn't have any side effects that we were aware of. No diarrhoea or anything else. This could be the same for you. You won't know until you try.

    Good luck.
     
  14. sheena

    sheena Registered User

    Aug 4, 2007
    22
    Thanks for all your responses - I agree with everyone that said we should give it a chance - my view exactly but unfortunately it is not the one my husband takes - he was given the prescription at diagnosis last April after 9 weeks in hospital with lumbar punctures, various MRI scans etc etc - he was very good at that stage masking what was going on and of course everyone in hospital was off their trolleys exept him - he has been in denial for the best part of that year although protests there is nothing wrong with him but then tells everyone and their granny (if she will listen) that he has Alzheimers:confused:
    My last try to get him to take it was only on Sunday and then the verbal started. However I have found all your comments for and not quite against taking it - watch this space I may be able to convince him one day - but by then it maybe too late -
    thanks again
    Sheena
     
  15. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,154
    Toronto, Canada
    Sheena,
    Why don't you just tell him that if he doesn't need it, the only effect it will have is to sharpen up his memory even more? Or that it won't have any effect at all if it's not needed? Or can you get away with calling it a vitamin?

    We often need little white fibs or honking big lies to get things done. I am a firm believer in lying my face off in order to accomplish the greater good. And this from a woman who as an adult could not even lie on the phone to her mother when she was 3,000 miles away:D .
     
  16. sheena

    sheena Registered User

    Aug 4, 2007
    22
    To be honest he has three older sisters who have told me to crush it up and put it in his food - but that's illegal - isn't it? What annoys me about it all is that we are in Scotland where there is no problem getting the drug and I have tried to use the tact that there are those in other areas who are desperate for it and can't get it - I feel he is being very selfish - hey maybe I'll go on the black market - joke!joke! - sometimes I feel I am getting too serious
     
  17. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,154
    Toronto, Canada
    I don't know about legalities

    ....but I would give the crushing it up a try, especially since his 3 sisters are suggesting. How is it illegal? Here in my mother's nursing home, her pills are routinely crushed up in applesauce. Nobody blinks an eye.

    What is the position in the UK on this?
     
  18. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    I don't think it's illegal, and if it is, who's to know?

    Nurses and carers won't do it because if someone refuses medication, it's a violation of human rights to administer it. But I don't think anyone's likely to sue you, are they? I'd give it a try.

    Love,
     
  19. reality

    reality Registered User

    May 31, 2007
    5
    OXFORD
    Medication

    Hi
    My husband has early on set vascular dementis due to vascular desease. I am trying at the moment to get the CPN to prescribe this medication. I am told that he will be need to have a speck scan before any decision is made. I am at a loss as the diagnosis has been given I feel they are playing with our quality of life. He has been given a scrip for trazazone. Any suggestion


    Thanks
     
  20. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,884
    Kent
    Hi reality, welcome to TP.

    I`m sorry I don`t even know what a `speck scan` is, but my husband takes Trazodone for anxiety and depression and it has been most beneficial.

    Take care.
     

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