Stopping Aricept. A daughter bristles.

Discussion in 'ARCHIVE FORUM: Support discussions' started by DeborahBlythe, Dec 3, 2008.

  1. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    North Derbyshire

    I don't want to alarm anyone, but I had POA for my mother and made myself known to her new GPs when she went into the care home, but they never consulted, informed or advised me on anything at all. The care home were glad to do so, but not being medics they weren't able to tell me why particular drugs had been prescribed or withdrawn, or what they were for. They just dispensed them as instructed.

    I was most disappointed with the GP Practice overseeing mum, especially as the cause of death was Emphysema, which to me is a long term condition needing specific treatment and mum had no such diagnosis or treatment. I suppose there is no point in pursuing this now that she is dead, but it does concern me.


  2. Carolynlott

    Carolynlott Registered User

    Jan 1, 2007
    Newcastle upon Tyne
    There seems to be a conflict of opinion. I asked my Dad's previous consultant (he moved areas when he went into his care home) and he said they wouldn't stop the galantamine (rimanyl). I discussed it with his new GP and he said yes, he thought they should stop it, Nothing happened, though, so I raised it with his "Challenging Behaviour Nurse" - she discussed it with someone and rang me back to say yes, they would start withdrawing it. She explained withdrawing it will make Dad decline more quickly but his quality of life is non existent and he seems so permanently depressed and agitated that I did wonder about the sense in trying to prolong things - it seems very cruel to prescribe a drug that is prolonging a miserable life. Also, what others have posted above about low blood pressure has made me think maybe the galantamine has been having an effect in making Dad look as if he's about to faint most of the time.
  3. DeborahBlythe

    DeborahBlythe Registered User

    Dec 1, 2006
    #23 DeborahBlythe, Dec 7, 2008
    Last edited: Dec 7, 2008
    Dear Carolyn, thanks for posting. I'm really sorry that your dad's condition has been so distressing. Each relative will have different experiences of dementia, I suspect, and no one knows what the future will bring. I wish you and your family all possible love and strength in supporting each other through this dreadful journey.

    In my mum's case, which is the only case I can really talk with, I think, some authority on, I feel able to bring, at least for the time being, some windows of cheerfulness to her. ( And she brings cheerfulness too: her smile lights up a room, and she still makes carers and relatives laugh.) OK, she is not always comfortable, not always happy, not enjoying the fullest life.

    Far from it, she is very much confined to a pretty restricted lifestyle which involves copious amounts of sleep. But some quality is still there, I'm pretty sure, and I'm thinking that Aricept played a part. I'd rather the professionals hadn't decided to gamble with this. I'd rather not feel that now I have to watch my mum slide faster into an abyss and watch every day for signs of decline. I'd rather she didn't have to suffer the distress of worse confusion.

    When my lovely mum reaches a more pitiful stage, I may perhaps think differently. For the moment,I'm going to try to shield her from anything I suspect to be unhelpful, if I possibly can. I don't think Aricept necessarily prolongs life, nor that it is suitable in all circumstances. It clearly isn't. I suspect however that it helps to keep a certain quality of life for some people. Please wish me luck. With love and kind regards, Deborah
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Deborah

    I wish you luck.
    I also wirh you the strength to discuss this issue with the doctor without getting upset. And I hope the doctor sees your mother as a dearly loved individual and not just another old person.
    Love xx
  5. Margarita

    Margarita Registered User

    Feb 17, 2006
    #25 Margarita, Dec 7, 2008
    Last edited: Dec 7, 2008
    If your mother was given this medication before the new ruling came out from NICE . They guideline is that any medication given to a person, before the guideline came out is that the medication is still to be given to the person. As my mother fall into those guideline .

    Your have to do a search or find out what guidelines NICE have for stopping this medication, seeing that this medication was given to your mother before the new guideline came out .

    Well that sounds like Malpractice, why should your mother suffer for his own , there a word for it , but I can not spell it .

    anther word for it is negligence, never forget Those who work in the medical profession, have a "duty of care" to ensure their patients receive the correct treatment in a proper manner. you doctor saying the above has not done that . No wonder he went on the defence

    If you really wanted to fight this case to keep your mother on this medication , you should challenge the doctor saying that you are making formal complaint about him if he stops the medication , before your mother see the psychogeriatrician .

    My doctor get the funding for my mother medication from my local PCT trust funding.

    If they stop my mother medication I could be challenging them all the way, to the courts of human rights .
  6. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Deborah, I wish you all the luck in the world.:)

    We don't have to accept what they say, it's just that it's so draining to have to fight.:(

  7. Clive

    Clive Registered User

    Nov 7, 2004
    My mum was taken off Aricept in August 2006 when the Consultant said her mini mental score had dropped to 12 (which was the standard the Consultant worked to in those days).

    Mum was put on half strenth for a month before stopping.

    Her last tablet was taken about the end of September when she also went into an EMI Home.

    She walked into the Home and was still carrying on conversations... though was in her own world and instantly forgot.

    By the end of November talking had almost stopped followed shortly afterwards by walking and feeding herself.

    I do not know if taking mum off Aricept was the cause of the rapid change... however I wish I was not left with the guilty feeling that it was and that I should have tried to get the Consultant to continue prescribing.

  8. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    North Derbyshire
    Dear friends

    It seems the message is to fight for what you think is needed. You might not be medically qualified but it is you who witnesses your loved ones daily lives, not the GP who turns up every few months. None of us are experts, but if we see something working, we want it continued, unless we are told there is something better. Often we are told there is nothing else, and then decisions have to be made that are painful for us. We all do our best.

    You can only do your best. Remember that.


  9. Margarita

    Margarita Registered User

    Feb 17, 2006

    read this

  10. DeborahBlythe

    DeborahBlythe Registered User

    Dec 1, 2006
  11. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada
    Thinking about you and your mum. Push that physician. My personal philosophy is that we are the doctors' customers and it would behoove them to treat us like adults. My GP is great - he does exactly that. Mind you, he's been dealing with me for nearly 20 years so he knows better.:)
  12. Sandy

    Sandy Registered User

    Mar 23, 2005
    Dear Deborah and Margarita,

    Sadly, I interpret the paragraph quoted by Margarita in a somewhat different way. To me it seems to be trying to prevent any disadvantage to a person who has started Aricept(donepezil) earlier (during a mild stage)than the guidance suggested. It does not mention people with severe AD on Aricept, only people with severe AD on mematine - a very different type of drug.

    I definitely think that you need to challenge this decision, I'm just not sure that the passage quoted will be sufficient.

    I've attached two sections from the NICE guidance on dementia.
    (huge PDF

    Section specifies that only specialists can initiate treatment and that a patient should be reviewed at 6 monthly intervals. Those reviews should include MMSE as well as global, functional and behavioural aspects. Any assessment involving MMSE should be undertaken by a specialist team, unless there are local arrangements for shared care.

    The section that follows also states cases where the MMSE should not be relied on - such as where people do not have English as a first language.

    Section 8.5.1 specifies in cases where behaviour or things like psychosis are an issue, drugs like Aricept can be considered, independent of MMSE score. It does not sound like your mother falls into this category (thankfully), but this might be useful for other TP'ers to know.

    As the GP withdrew Aricept with out the full six-month assessment, I would ask him to re-instate it immediately, at the same time he initiates a referral to the appropriate consultant.

    This may give you some time to explore the options. There certainly is evidence that Aricept is useful even in late-stage AD:

    It may make all the difference in preserving enough communication skills to enable a person to say when they are too hot/cold, hungry, in pain, etc.

    If eventually the consultant decides to withdraw Aricept on the NHS, it would seem like you now have the right to request a private prescription - given Alan Johnson's statement on this topic in November.

    Take care,


    Attached Files:

  13. Margarita

    Margarita Registered User

    Feb 17, 2006
    #33 Margarita, Dec 10, 2008
    Last edited: Dec 10, 2008

    Yes , but it could be challenge on the grounds that it was given before the new ruling came out in 2007 even if it was not given in the Mid stages.

    As Deborah mother doctor can’t even remember why he gave her mother this medication in the first place . how is he going to know at what stage Deborah mother was in when it was given to her ?

    also as long as it was given before 2007 , as doctor must of wrote what date it was given in to Deborah mother notes .

    Only the psychogeriatrician can stop the medication if Deborah mother scoring falls under 10 .
  14. julieann15

    julieann15 Registered User

    Jun 13, 2008
    Mum was prescribed Aricept and her score was around 25/26? She only seems to score badly on the three words she has to remember and recall 3 mins or so later. We always see the consultant on her coffee morning (Tuesday) so she always remembers the day month year etc but luckily the consultant always interviews me separately so I can fill him in with any shortfalls!

    If my mum is having it so early- she is nowhere near the 10-20 (moderate) mentioned in the above??

    Julie xx
  15. Arthur Stedman

    Arthur Stedman Registered User

    Jan 5, 2009
    Hello Deborah, Spoke to a nurse recently, who instructed me never to stop my wife's medication (Aricept). Her father was in a nursing home, where his Aricept was stopped, and he went downhill straightaway.
  16. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada
    Hi Deborah,
    What's been the outcome? How are you & your mum doing?
  17. terry999

    terry999 Registered User

    Mar 27, 2008
    My mum's in a nursing home has been on Aricept for approx 18 months.

    She has stopped for a month, haven't noticed any further decline although she is in advanced stages.

    I've read and been told stopping causes more rapid decline. In my mum's case if there was a decline it could have been mitigated by upheaval of going into care.
  18. AnnS

    AnnS Registered User

    Apr 26, 2008

    Hi Deborah,
    I have to agree with some of the other posts. I really do think its outrageous that relatives meds can just be changed with no discussion first, with regard to consequences. It does beg the question why the care home did not consult with you first (or at least phone to let you know the GP had been and what the plan was?)My mum was on aricept and that too was stopped with no controlled withdrawl but to be fair that was only after the consultant discussed her plans with me. Mum was very agitated - she is a bit of a wanderer. The explanation I got was that aricept works well initially but can (in some cases) cease to provide any benefit and cause agitation/anxiety in the patient. On that basis mum came off it. However the consultant did advise that as soon as someone stops taking it there is a notable decline in cognitive ability and I have to say she was right. Mum is more settled but her dementia has got worse (bit of a depressing choice really). Hope this helps but I would be having a chat with the care home to make sure they understand that you (as nominated next of kin/POA etc) are contacted before anything changes. Likewise a chat with the GP to find out why the change. I don't know if there is a big difference between the Scottish and English systems but my mum is in Scotland (even though I'm in England) and absolutely nothing happens to mum without mu approval. I hope you get your answers but you have a right to know.


  19. DeborahBlythe

    DeborahBlythe Registered User

    Dec 1, 2006
    #39 DeborahBlythe, Mar 7, 2009
    Last edited: Mar 7, 2009
    An update

    There have been one or two other theads started about stopping Aricept (Donezipil) recently, so I thought I had better update this one, for better or worse, as it may be partially helpful.

    Nothing is ever straitforward and this saga is no exception. Despite my annoyance and disgust with the GP, he had, up until December, proven to be likeable and attentive to my mum. His intransigence over the Aricept was out of character and depressing. As a result of the impasse over prescribing Aricept he referred my mother to a psycho-geriatrician who turned up to assess her a few days before Christmas and about a fortnight after the drug had been stopped.

    The psycho geriatrician was half an hour late and arrived at the time when my mother is usually put to bed for the afternoon. He asked me to withdraw from the room as 'too many people around might confuse her' but kept by him a nurse from the NH and a manager, whilst I stood outside the room on tenterhooks. After about 4 minutes he asked me to come in and immediately asked my mother if she knew who I was. She didn't, which was used as evidence to blow away my statement that my mother recognises me.

    In his view, my mother might not have Alzheimers, and more probably has vascular dementia. There are no GP records in my mother's file predating her admission to the NH two years ago. Had she had a brain scan? In this district Alzheimers is only confirmed after a brain scan. My mother had her Alzheimers diagnosed by a psycho-geriatrician at a memory clinic in a neighbouring borough when she was cared for in a CH 'across the border' so this doctor proposed writing to the neighbouring psychogeriatrician to find out what diagnostic tests had been undertaken.

    He based his diagnosis of vascular dementia on the fact that my mother's words are confused and because of a vascular incident in the past. When I asked what he was referring to, he reminded me that my mother had had a heart attack previously. I was amazed, because the heart attack was perhaps 25 years ago and hardly seemed relevant. He also said that in this distirict Aricept is not prescribed for late stage dementia. It was in vain to point out that the Aricept seemed to be keeping my mum stable, as he preferred to attribute any stability to the care from the nursing home, not the Aricept.

    It was left that he would liaise with the other psycho-geriatrician and come back and review my mum after Christmas. In the meantime he asked the staff to monitor whether my mum was showing any deterioration or not.

    When I re-visited my mum that same day, after work, the first thing two of the carers said to me was that my mother had been asking where I had got to earlier in the morning and calling for me by name. Sod's law that she didn't recognise me when the doctor was there later in the day!:eek:

    Since then I have been watching my mum carefully, and to my surprise, she didn't seem to be any worse in the first few weeks. The only deterioration that I could honestly report was that she no longer seemed to recognise me as easily as before.

    She doesn't call out in relief when I walk into the dining room, but still smiles and calls me darling after a little while as if she does know me. And once in a blue moon she calls me by my name. She has cataracts so it is hard to say whether this is making it more difficult for her to recognise me, let alone her poor hearing, which really is pretty bad now.

    By the time the psych-geriatrician revisited a few weeks ago, there was little to report to him about deterioration from the staff point of view. All I could say was that I think she is deteriorating a little because she doesn't recognise me as readily, but he hadn't believed she recognised me from the outset, I suspect.. I also notice that she sleeps more now, I think, and in the last few weeks has been more difficult to feed. On the day of his re-visit, she was too sleepy to even respond to him.

    His view was that my mother has mixed dementia, (vascular and Alzheimers), that it is not appropriate to prescribe Aricept for her because she is in late stages, and has gone downhill since the Aricept was prescribed. I thought this was a rather drastic statement. Of couse she has gone downhill, no-one expects Aricept to hold things back forever, what exactly did he mean? She has been stable for ages.

    Well he showed us records of what she was able to do when she was first prescribed Aricept in 2005 such as cooking for herself (!!) and pointed out, rather unnecessarily, that she can't now.

    (Actually when she was started on Aricept, she couldn't make herself a cup of tea, let alone cook for herself, but now she has proven not to be Delia Smith in her 94th year, she may not have Aricept.)When I repeat that my mother has been stable , prior to the withdrawal, for a long time, he simply says that is because of the good nursing care.

    His final coup de grace was that my mother does not have capacity to agree to the re-introduction of Aricept. (I have EPoA but nothing more). How come it is OK to stop treatments when someone lacks capacity, but not to re-instate them?

    I still feel sick about all this. I thought the Aricept was sustaining my mum and now she is very gradually getting more confused, but the decline is hardly perceptible to the carers and could be attributable to a number of other factors.

    And of course, I know she doesn't recognise me as easily as she did before. So the dilemma has been along the lines of, is it fair to go to war over the fact that my mum doesn't recognise me, or is that too selfish a reason? I think it is too selfish a reason. And if the whole issue can be batted out of court on the grounds that my mother doesn't have capacity to consent to take the treatment anyway, what is the point?

    I'm sorry this is not a straitforward update. Longwinded and perhaps a bit depressing. I do feel depressed about being unable to improve my mum's care. She told me I was a blessing the other day, and she really loved me. " You must have had a wonderful mother" she added. :(:)I assured her I still have a wonderful mother and gave her the biggest hug.
  20. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Deborah

    I hope you said you had. :)

    Your post does make quite depressing reading. Not just because there is some deterioration in your mother`s condition, but also because the consultant seemed to take delight in overriding your opinions, observations and feelings. It`s as if he was trying to catch you out.

    It could easily be your mother`s cataracts which make her unable to recognize you at first sight. And her hearing loss might not enable her to recognize your voice, which under other circumstances, her hearing would have been a heightened sense.

    The consultant should have known enough to make allowances for slower processing, usual in older people and even more usual in those with dementia.

    I cannot comment on the withdrawal of Aricept, as I don`t have enough knowledge in that area, but the consultant seemed to be one of the dying breed who has put himself on a pedestal, and is unwilling to take any notice of the observations and knowledge of those nearest and dearest.

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.