1. Expert Q&A: Protecting a person with dementia from financial abuse - Weds 26 June, 3:30-4:30 pm

    Financial abuse can have serious consequences for a person with dementia. Find out how to protect a person with dementia from financial abuse.

    Sam, our Knowledge Officer (Legal and Welfare Rights) is our expert on this topic. She will be here to answer your questions on Wednesday 26 June between 3:30 - 4:30 pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

  1. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,699
    Mil was prescribed memantine, a few months ago, starting on a dose of 5mg, which has gradually been increased. She is now on 15mg, and we've been told that at this dose, she must now stop taking the donepezil, which she has been prescribed since diagnosis, well over 4 years ago.

    Can anyone tell me, what if any, impact stopping the donepezil may have on her? I know both it and memantine are given to help with the symptoms of dementia, and since she has been on the memantine, although we still get bad phases of sundowning and agitation, they tend to last just for a couple of days, and in between we can get up to 10 days of her being relatively 'calm', by comparison. I guess I'm concerned that with the donepezil stopping we may get more agitation, and I'm also concrned that the progression of the illness might speed up even more :(

    Thanks :)
     
  2. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    58,718
    Female
    Dundee
    My husband was on Donepezil (Aricept) for a very long time. They took him off this when they felt that it was no longer effective. At that point he was put on Rivastigmine (Exelon) which is in the same family of drugs, if that is the right description. They are both 'cholinesterase inhibitors'. After a few years Bill's MMSE score went down to around 10ish. At this point they said that they wanted him to come off the Exelon and go onto Memantine (Ebixa). It was explained to me that this is a different kind of drug and was more used to reduce agitation or difficult behaviour in people who have dementia. I argued that Bill did not display these kinds of behaviours and I asked if he could have dual therapy, that is being on both drugs as your mother has been. I was told that because he didn't display this kind of behaviour he couldn't be recommended for dual therapy:confused: Anyway I, of course, lost the argument and he had to come off the Exelon. In hindsight I suppose as his score on the test was so low the Exelon was no longer of any benefit to him. I ended up saying I didn't want Bill to have the Ebixa as it made him even more sleepy than normal.

    Sorry none of that really helps you! It's just our experience. As far as I know the cholinesterase inhibitors are intended to try to slow down the progress of the disease and the Memantine is used to attempt to alleviate difficult behaviour or agitation. I was always concerned about a more rapid decline if Bill came off the Aricept or Exelon. The problem was I would never be able to tell if he would have been the same on the drug or off it.

    Again, sorry for the unhelpful ramble!
     
  3. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,699
    Thank you Izzy - not unhelpful at all, Hun - it really helps to read of others experiences :)

    Mil - as I am sure you know - does suffer from a lot of agitation, and that was the reason for the memantine, as respiredone seemed to be not as effective as they hoped - though they have said she is to remain on it. Whilst on the donepezil, Mils scores dropped from mid-late 20's to 15, over a 12 month period, and though she hasn't been tested since (about 16 months) , I would imagine that they are even lower now - so perhaps the effectiveness of the donepezil is part of this.

    Like you, I guess I would be hard pressed to say if removing the donezepil will speed up Mils decline - particularly as there has already been an on-going and noticiable downturn in her abilities and awareness over the last two years anyway :( My main concern is that whatever the impact, that we don't see an increase in agitation and upset - both for her sake, and ours x
     
  4. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,839
    Suffolk
    OH has been on donepezil since diagnosis, 7? years ago. Memantine was added nearly 2 years ago after delusions got difficult to cope with. His behaviour is once again 'difficult' so he's in respite. I aim to make another appt with consultant to see about changing or adding something else. We only saw consultant in December, but he wouldn't/ didn't listen to me and promised to phone. He didn't. Now we have another crisis. Don't you just love 'em?
     
  5. tre

    tre Registered User

    Sep 23, 2008
    1,353
    Herts
    My husband was on aricept for three years and to start with it definitely seemed to help. Then he got really anxious and was hallucinating. Various drugs such as Citalopram were tried in additionto the aricept. Nothing seemed to help. I asked if he could try memantine and our consultant said that he thoght the way to go was to wean him off allthe drugs and then try things one at a time to see what was doing what.
    I was very worried about this fearing a big irreversible downturn but to my absolute amazement he was better without the aricept as the hallucinations decreased. Then the mamantine was added and this has vastly improved the anxiety. He now takes Levitoacetam as well for myoclonus plus calogen which has reversed his weight loss.
    I think the thing is, quoting Life of Brian that we are allindivuduals and the meds that suit one person may not suit another.
    Tre
     
  6. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,699
    That is just so frustrating, Spammar :( Its bad enough when specialists from other areas of medicine don't listen, wouldn't you think a dementia consultant would have more sense - and more consideration? So rude and thoughtless to leave someone forever waiting for a promised phone call, that on top of not listening in the first place is dreadful :( I hope you get to see him soon - and that when you do, he listens!

    Has your OH been on both donepezil and memantine at the same time? I've been told that Mil must come off the donezepil because the memantine dose is at 15 mg a day?

    Thanks tre :) Mil is really anxious and suffers not so much with hallucinations (though they are occasionally present) but rather with delusions - sometimes they are harmless (if exhausting, as she can be constantly up and down looking for non-existant people or 'things' that she was sure were there just a 'few minutes ago', or because she is convinced she has to do this or that), but often they are upsetting, and she gets paranoid and verbally very unpleasant. She also suffers quite badly from sundowning. She is on respiredone and various other medications (anti depressants) to try and relieve this anxiety (has been for around 14 months), but none have been wholly successful. Since being on both the memantine and donepezil (and all the others) the very severe sundowning/agitation has deminished in frequency - we can now get up to 10 days of relative calm, though she is very weepy and inclined to very much look on the dark side of everything - and I am worried that removing the donepezil might start up the pretty much daily bad agitation again:( I had thought that whilst not perfect, this was a big improvement on what we were getting, and really don't want it to get worse again.

    But as you say, it is so different for each individual - I guess we are just going to have to follow the advice, and keep fingers crossed that any change turns out to be good for Mil xxxx
     
  7. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,839
    Suffolk
    Hi Ann , yes, he's been on both for nearly two years, since the Memantine was added at the last bout of delusions, though he was on Quetiapine first to get rid of delusions pdq!
    He's also been on citalopram for about 5 years after he stopped eating, went from his normal 10 stone or so to 7 stone. You could have sharpened knives on his shoulder blades! Fortunately got him through that, the citalopram was meant to encourage his appetite, by getting rid of anxiety.
    I have a gps appt this morning, so will discuss OHs latest with her. Need to get something sorted, preferably before he comes home from respite on Monday week.
     
  8. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,699
    Thanks Spamar. I wonder why its so important that Mil stops the donepezil then? Maybe the dosage? Is Mil on more, at 15mg, than your husband was? Or maybe its Mils other health conditions make the risks greater - diabetes, COPD, angina?

    Got fingers crossed that you can get something sorted out before your OH comes home, hun xxx
     
  9. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    58,718
    Female
    Dundee
    It may be that her MMSE score is below the level where they are allowed to prescribe donepezil.
     
  10. Beate

    Beate Registered User

    May 21, 2014
    11,490
    Female
    London
    I have read that if the score goes under 10/30 it will be stopped. However, OH is under that and still on it as the doctor said no way would she suddenly stop it, who knows what that would do. So I guess it's up to the doctor to decide.
     
  11. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,699
    Thanks Izzy - but Mil hasn't had any memory tests for about 16 months :confused: At the last one - pre respiredone and memantine - the score had dropped from mid/late 20's to 15, but no changes to the donepezil were suggested then. From what the CPN has said, and the GP, this has come about because they feel that Mil is now on what I guess you could call the best dosage of memantine for her - the CPN said the consultant would have left it had the daily dose been less than 15mg?

    I asked the CPN what - if anything - we should look out for with the meds stopping, and she said it should be OK, no problems - but as she also said, everything with dementia is so individual, so she could guarantee nothing - which is why I asked, as sometimes (often) you get a lot more info from the experiences of the T.P people :)
     
  12. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,699
    Sorry Beate - crossed posts :)

    As I said in reply to Izzy, Mils last score was 15 - this has come about because (as far as I can work out) of the introduction of memantine (which does seemed to have helped, after a rocky first couple of weeks). I must admit, it suddenly being stopped and how that could impact was one of the things I wondered about :(
     
  13. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,839
    Suffolk
    Back again! I could have sworn he was on 10 mg donepezil, but no, just 5mg, looked at his prescription. Maybe that's why. He hasn't had a memory test done for years, have no idea why. I am sure he wouldn't score 28/30, his previous low ( about 2 years after diagnosis! He hasn't got much else wrong with him, just hi BP.
    I asked the GP about the two drugs, but she didn't know! Told me to ask the consultant.
    After the botched appt before Christmas the consultant actually phoned today! Maybe cos I'd phoned secretary to ask for email so I could update him. So I told him all about what's been happening and he's going to increase the citalopram to help calm him. I hope to god it works!
    Now got a fistful of appt for myself. Based on X-ray I have already had, there's a sporting chance I might have heart failure! Now more bloods, ECG, echocardiogram. There is already some damage but nothing to worry about (!!). I just so don't need this! Can stress be involved?
    Because the home lost several bits of clothes last year, I said I'd do all the washing. Picked up first lot today, 5 days worth. I can't believe the amount they reckon he's gone through! Even found someone else's pants! How the hang did they get there! And yes, I did give them an itemised list! I have been washing all afternoon!met a friend there, casing the joint for her OH. He has gone downhill after pneumonia, so much so that, from living at home and still able to walk miles. It's hoisting and CHC!
    To add to it, the loo is leaking. Got plumber to come round and apparently it's the wrong loo for that situation! It's been there 8 years for heavens sake.
    What else ?
     
  14. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,699
    Boy Spamar - you have such a lot to contend with at the moment - my heart goes out to you, hun :( And yes - I think stress is a massive impact on a carers health. So easy for me to type 'You have to take care of yourself', when everyone on here knows it isn't so easy to do.

    My mistake - typing and posting without checking (again!) - its the memantine dose that is 15mg, donepezil is (was) 10mg, and its the level of dosage of the memantine that the CPN mentioned as being relevant to stopping the donepezil.
     
  15. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,839
    Suffolk
    Hi He's on 20 mg Memantine, I don't think you can go higher.
    Working my way through a massive amount of ironing, more from 5 days in care than a week at home!
    However, going out with some friends for coffee later, great! It's blue sky and sun here, just right for going out.i
    Must try and count birds later as well.
    Have a good day
    S
     
  16. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,699
    Awwww - hope you have a lovely time with your friends, hun.

    Ironing I'm not too bad with, today - but washing is another story - because I've had to put yet another load through twice as I missed one of those flipping tissues - again! :rolleyes:
     
  17. Grace L

    Grace L Registered User

    Jun 14, 2014
    647
    NW UK
    Ann
    I've just googled ' lint and tissue catcher ' for washing machine.... several items are available.
    The Lakeland shop (Other shops available :) ) sells them.
    I don't know how well they work, but this shop will refund you if not happy with product.
     
  18. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,699
    #18 Ann Mac, Jan 25, 2015
    Last edited: Jan 25, 2015
    Thanks Grace - I never thought to look for something like that! Definitely on the shopping list this week - I'm pretty good for checking her clothes, but think that one sneaked in tucked into a nighty which I hadn't checked :rolleyes:

    Edited to add to Spamar :)

    Hope you had a lovely time with your friends, firstly :)

    Secondly - so your OH's dose of memantine is higher than Mils? But he still had the donepezil, so the only thing I ca think is that Mils other ailments and the medication she has to take must play a part in the donepezil being stopped for her!
     
  19. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,839
    Suffolk
    Ann, yes probable. He is only on aspirin and anti depressants ( dose of that now being increased). Really, apart from dementia, pretty fit! I'll say nothing about his temper though. It's me that seems to have everything else!
    Tissues , does it matter about which make of tissue it is? OH has a habit of leaving tissues in pj pocket, they come out a sodden mess, but still in his pocket! Essential Wa....se, but other brands may be the same. If you haven't got your lint catcher yet, maybe worth a try
     

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.