Aricept ... current practices, rules and opinions please

Discussion in 'ARCHIVE FORUM: Support discussions' started by Charlie, Feb 14, 2006.

  1. Charlie

    Charlie Registered User

    Apr 1, 2003
    161
    Some help please..

    About a month ago, my father who is now in a residential home was reassessed (again) by the memory clinic and we were told again that the Aricept was not making a blind bit of difference to his behavior and condition. So we agreed to gradually take dad off Aricept, but keep us informed about his condition and any changes. We were not kept informed but noticed the changes ourselves over the last two weeks.

    I am very puzzled by two statements that have been made. Firstly by the care home and secondly by the memory clinic that assessed dad and recommended withdrawal of Aricept.

    Firstly, we have been told that it is normal practice to withdraw Aricept one and individual is in a care home. The reason being that the person now has 24 hour care and there is less need for Aricept.

    After only one week we have noticed a dramatic change in dad. He does not recognise any of us now. Before he recognised immediate family. It as if we are not there. I appreciate that this is to be expected in the later stages of Alzheimer’s, but it is very sudden and he seems so much more confused.

    Secondly, the next statement. We have been told that once someone has been taken off Aricept, there is absolutely no point in putting them back on it. Even if the decline has been dramatic after coming off Aricept, it is unlikely that we can have our dad returning to the condition he was in a few weeks ago. In other words, the damage has been done.

    This second issue/statement is causing a lot of upset to my mother and I. It is hard to believe that the people who recommended that dad stop Aricept in the first place (a very bad judgment based on cost in my opinion) would be well enough informed to make this statement.

    Has anyone heard this before, that is, "once someone has been taken off Aricept, there is absolutely no point in putting them back on it". The solution to me is simple; we put dad back on Aricept for another month and see what happens. But I'm hitting a brick wall. I need some supporting evidence from somewhere or I've got a real battle on my hands.

    thanks
    Charlie....
     
  2. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Charlie, one of my colleges was in the same position when his wife first went into a care home. After some weeks in the home it was decided (I don't remember who made the decision) to stop her Aricept, as it was considered to be of 'no benefit'

    The change in her was just as you report with your dad. He husband challanged this decision and medication was re-instated. No she never quite made up the quality she lost so quickly, but it did help to halt the rapid decline.

    Hope this helps, love Connie
     
  3. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Charlie
    when Peg reached the bottom score in her memory test,her consultant said that he would not dis- continue the Aricept because if he did there would be no going back.
    She is still on them
    Norman
     
  4. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    787
    Buckinghamshire
    Join the club

    Charlie,
    Reading your post makes my hair stand on end with the memory of it all: my husband (although not in a residential home) was taken off Aricept at the end of August last year, and we experienced exactly what you describe - he went downhill so fast, it was truly scary! My only consolation is that we had had the benefit of Aricept for five years ....
    I had to fight hard to get a prescription for Ebixa for him, which has helped a bit, but we certainly have not regained what was lost. I was terribly hurt by the consultant (new to us, since our original consultant retired last year) when he first of all made light of all my concerns about stopping Aricept, and then told me very bluntly a couple of months later, that "it was about time I considered alternative solutions for the care for my husband".
    I feel like screaming when I hear of the recommendations by NICE - you are yet another person who could tell them first hand just how bl**** wrong they are!

    It is true that not everything suits everyone, but in my opinion anything is worth a try, and I hope that you get something that helps your Father recover a little bit of his quality of life, whether that is by re-introducing Aricept or something else!

    Best wishes!!
     
  5. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Norman - so how long has Peg been on Aricept now?
    (Sorry, you've doubtless said this before on other posts, but "I've forgotten" :eek: )
     
  6. Jude

    Jude Registered User

    Dear Charlie,

    I'd get the Aricept reinstated immediately.

    Actually you have worried me so much that I am going to check with the Nursing Home about my parents' medications for Aricept and Ebixa.

    Jude
     
  7. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Lynne
    Question
    Norman - so how long has Peg been on Aricept now?

    7 years +.

    We had private scripts before they where available on the NHS.
    Cost us about £140 a month until they where avaliable
    Norman
     
  8. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    639
    West Sussex
    Hello Charlie

    My Mum, also in a residential home, was taken off galantamine on her consultants recommendation, late last year, the spiral down has been very fast and it shows no sign of slowing down as yet.

    She has lost most of her speech and language skills, so from chatting away for ages, she now speaks if spoken to, but struggles to put more than half a dozen words together before making up words and sounds to fill the gaps.

    Her walking is getting more unsteady and eating, drinking and personal care are all becoming too difficult for her to understand.

    The galantamine may not having been "doing any good", but it wasn't causing any harm either, the withdrawal of it has caused havoc in my poor Mum's already muddled brain.

    I would urge you to see if the medication can be re-started, we had no luck, but you just might.

    Keep fighting for your Dad,

    Kathleen
     
  9. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Is there no way in which the first-hand observations detailed in this thread (and others) can be used to "educate" some of the medics who have control of prescribing AD drugs. This is appalling!
     
  10. barraf

    barraf Registered User

    Mar 27, 2004
    308
    Huddersfield
    Aricept

    Hello Charlie

    Margaret has twice been taken off Aricept because she scored less than 12 on the mini assessment.

    Twice I have put her back on and then informed the memory monitoring service, and informed them of why I did it.

    On each occasion I kept a log of everything that happened, even the smallest deterioraition this seemed to satisfy them and both times they agreed that she should carry on taking it.

    She has now been on Aricept about five and a half years, and personally I think it is coming to the end of it's useful life, but until I see that she is getting no benefit I shall contimue to fight for it.

    The memory monitoring nurse told me last time that she had another paitient who only scored three but they contimued with the Aricept because she was getting physical benefit if not cognative.

    I realise that it is easier to argue when the patient is at home but I suggest that you fight to have it re-instated.

    Cheers Barraf
     
  11. Charlie

    Charlie Registered User

    Apr 1, 2003
    161
    #11 Charlie, Feb 19, 2006
    Last edited: Feb 19, 2006
    Thanks Barraf and everyone who replied to this thread.

    It has been a real battle but we have had the Aricept reinstated for now. It was the GP who came up trumps in the end, but is seems that we have upset 'the system' as everyone else seems to think that there is no hope and Aricept is just a waste of time (the battle still isn't over with the Memory Clinic). We have watched dad change in front of our eyes over the last couple of weeks after being taken off Aricept. It may seem like a little thing to the memory clinic and the people who make these decisions in the NICE office; but recognition of family members and the ability to crack a joke is worth everything to my mother and the rest of the family. It doesn't mater if the individual is in the early stages, mid stages, later stages or being cared for at home, is in residential care or in hospital.

    If Aricept can bring this back and keep this last thread of my dad's personality, it is worth every penny. For Christ's sake hasn't dad (and the whole family) been been robbed enough over the last six years. Aricept is more than a glimmer of hope in our situation and I'm totally convinced that it has taken the edge and slowed down dad's decline dramatically. The last two weeks has been the absolute hard and painful proof of this.

    Thank you, Dr. Hachiro Sugimoto, (the principal inventor of Aricept).

    thanks to you all for your support
    Charlie.....
     
  12. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    787
    Buckinghamshire
    Well done, Charlie! Definitely worth the fight. I hope your Dad responds well to the re-introduction of Aricept.
    Best wishes!
     
  13. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    Norman

    when you say bottom score in her memory test , mum been ask
    Question about time & dates at the care home she is staying for 2 weeks, is this how the doctors work out what stage mum is at ?
     
  14. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    639
    West Sussex
    Hello again Charlie

    I am so pleased your Dad is back on Aricept. Well done your GP, can I have him for my Mum please?

    You are absolutely right, the ability to crack a joke and recognise the loved ones is priceless.

    Mum is still sliding downwards post galantamine, but as things are, I would rather she continue this way than risk going back onto another drug that could slow it down again, as she would be at a stage where she struggles with every little thing she is asked to do.

    The only huge consolation is that she still seems reasonably relaxed and happy most of the time, so we have to be thankful for small mercies.

    Kathleen
     
  15. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #15 Margarita, Feb 21, 2006
    Last edited: Feb 21, 2006
    Nada


    Thank-you for that nada

    I ask the nurse at the rest home where mum is staying at for a few weeks, what was her score she said mum scored 5, now I am wondering 5 out of what ?as that is what my daughter ask me when I told her , ….but it said on the paper that 5 was moderate to severe, but then I read on hear that they can stay on that stage for years, that put a smile on my daughter face.

    Thanks I real do appreciate all the time & effort you all put on this site, I was holding this lovely sweet old lady hand who was just like a baby, she would falling asleep holding my hand in the front room in the care home while mum held my other hand & this lady would wake up & say do I have to go home ?you won’t leave me will you ,I tell her no & she would just go back to sleep . wake up & ask all over againa

    They played bingo to day & this lady swap mum ticket with hers & the lady won ,mum was upset but said oh she is old I do not mind ,gosh I came home feeling so emotional ,be glad when mum can come back home


    But then now I am thinking relishing how I should enjoy every moments of good memories with mum now lucky I am to have her, before she move on to the next stage
     

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