Stopping Aricept. A daughter bristles.

[DeborahBlythe]

Turned up to see my mum this evening and a nurse told me, in passing, that the home's GP had decided to stop my mum's Aricept. The nurse couldn't say why because he wasn't around when the GP visited.

My mum has been on it for a long time and is on a sort of plateau. Still enjoying some quality of life, but very frail physically. Some medication she spits out vehemently because of the taste, but Aricept is not one of the offending pills. As far as I have managed to fathom, she always takes her Aricept.

My feeling is that the Aricept has helped her. Her decline, though stark has not been troubled with challenging behaviour. She has mostly been gentle and humourous. She is 93 and I don't see why this drug should be stopped all of a sudden. The nurse also said that apparently it doesn't need to be tapered off, it can just be stopped.

Does anyone else have experience of Aricept suddenly being stopped? I'd like to challenge this decision..

 

[Helen33]

Hello Deborah

I know nothing about Aricept but I would imagine that the first port of call would be to ask the GP what he has based his decision upon. This doesn't have to be confrontational but simply a wish to be informed. Based upon the information you receive, you may or may not wish to consider further action.

It seems like there is always some stress to deal with

Sending love and best wishes

 

[Squibbs]

My father has had his Aricept decreased because of a fall in heart rate - his pulse had become slow and 'thready' - after an ECG the Aricept was decreased from 10mgs to 5mgs - maybe your mother had a similar side effect? Sue

 

[Grannie G]

Dear Deborah.

Whatever the reason Aricept has been withdrawn, the GP is insulting to your care of your mother not to have discussed the issue with you beforehand.

I suppose they get round this because the EPA does not cover medical care.

I would certainly make an appointment to see the GP.

Even if the nurse wasn`t around when the GP visited, surely some reference will be in your mother`s notes.

I hope you get some answers.

Love xx

 

[Margarita]

--------------------------------------------------------------------------------

Whatever the reason Aricept has been withdrawn, the GP is insulting to your care of your mother not to have discussed the issue with you

I agree with that also .

Only reason I would of thought that they would stop the medication, is because “” in there meant to be expert option “” it not working.
How long has your mother been taking this medication?
Have to made an appointment to talk to this doctor that has stop the medication ?

 

[christine_batch]

Dear Deborah,

Although Peter is in last stage, his Consultant still has him on Aricept.

Any change is Peter's medication and I am always kept informed and have access to his Medication Records at the Nursing Home.

When Peter had a chest infection, the N.H. phone to tell me the Doctor had prescribed antibiotics.

Best wishes
Christine

 

[CraigC]

Deborah,

Yes, unfortunately I have experience of this.

It was about the time that NICE came out with the decission to only allow aricept for people at certain stages. The GP stopped it without discussion first time as the consultant said it was no longer necessary - dad was mid stage.

I'll try to find you my posts on the experiences, but on both ocassions I spoke to the GP directly and she agreed to put dad back on. It was a battle but the way that I put it to dad's GP is it was the last bit of hope mum had and if she took it away mum really had nothing else left. The aricept was not just about dad but we all really believed it made a difference.

The second time it was stopped was when dad was in care. This time we were given no notice and it was decided between the care home manager and the GP. I was a little more upset the second time and as we really noticed a marked difference in dads decline, it was difficult as there were other drug changes involved. It was re-introduced based on relatives concerns.

My advice would be to speak to the GP to express you concerns. As a relative you have a right to be involved in such and imporant decision. If it is a financial decission, which it proabably is, make sure that Aricept can be reintroduced immediately if there are any noticable changes (and I would get that it writing). By the way, the dose should be reduced slowly as with many drugs, not stopped all together.

Keep a diary and if you notice any marked changes present them to a GP.

God, it still makes me angry how they took dad off a drug that cost £2.50 per day - the tests are definitely not conclusive and NICEs decision is based on cost in my opinon. He was paying £100 per day care home fees with little support from the state at the time. £2.50 per day was a drop in the ocean.

The third time, dad was at a much later stage and they were more adament that he should be taken off. Mum had many of her own problems. I monitored carefully and there were no marked changes six weeks after dad was off Aricpet. Not sure if I made the right decision, but it was going to be so much of a battle.

You should definitely have been notified.

Hope that helps more than a chocolate tea pot.
Kind Regards
Craig

 

[sue38]

I am never entirely sure who has ultimate responsibility for deciding which drugs my dad should or should not take.

From our experience it seems that the dementia consultant will recommend a drug, but always checks with the GP (who presribes the drug) as to whether it is suitable for my dad, given his other medical conditions.

I know my dad was considered unsuitable for Aricept due to an irregular heartbeat - this was actually on the advice of a heart specialist.

It may be that your mum has other medical issues and that is why it was stopped, or for economic reasons. Whatever the reason, it should have been discussed with you.

 

[Skye]

Hi Deborah

John was on Reminyl, not Aricept, but the principle's the same. I have had two experiences of withdrawal of treatment.

Firstly, his consultant asked me if I agreed to Reminyl being withdrawn. She said it would be tapered off gradually, and if at any time there was a marked decline treatment would be reinstated. Given John's very poor condition at the beginning of the year, I agreed to a trial. She also said that once these drugs stop working on the dementia, they can have a soporific effect. There were no effects on his dementia, and he was certainly more alert for a while, though he's now back to sleeping all the time.

The other example was when our GP decided unilaterally to withdraw treatment for infections, as he was having so many of them. I do have welfare POA, Scotland has had this since 2002, but I was not consulted. Like you, I was informed by the NH staff.

I fretted about this for a couple of days, then wrote to the practice manager. Great result, letter of apology, personal visit and apology from GP, treatment restored, and since then I get everything I ask for.

Definitely ask. If there is a reason for the treatment to be withdrawn, insist on the guarantee that it will be restored if there is a decline.

Good luck,

 

[Canadian Joanne]

Hi Deborah,
I don't have personal experience but a very good friend's mother was taken off Aricept as her mum's partner didn't want to pay for it. There was a marked decline and my friend forced the issue and got her mum back on it.

I don't know if there is any medical literature on the effects of removing Aricept but there is certainly lots of anecdotal evidence of how patients decline noticeably once the Aricept is removed.

At the very least, the GP should have consulted your FIRST and explained why. Perhaps there is a good reason or perhaps the GP thought it wasn't working any more. I don't see the second as being a reason to stop Alzheimer's medication.

My mother is on Reminyl and Ebixa and we pay for it. She is late stage, wheelchair bound, doubly incontinent and just babbling a few words. But as long as she is physically able to take the meds, I will keep her on them. I'm not prepared to risk her possibly declining more quickly by taking her off the meds.

My opinion only.

 

[Margarita]

I am never entirely sure who has ultimate responsibility for deciding which drugs my dad should or should not take.

I also wonder that also .

I was told that if my mother was in a care home full time and my mother memory scoring was under 12 , that NICE could legally take the funding away from our local PCT that is funding it. from our doctor .

Seeing that my mother memory scoring was a 10 in 2007 , but living with me. My doctor still gets the funding for it from our local PCT .


Lucky for me, my mother got Exbiza before the new ruling came out on the NHS , so my doctor still gets the funding for it from our local PCT trust , another stroke of luck is that our doctor is also a consultant neurologist at our local hospital and on his opinion he says my mother should not be taken of this medication , as other complication could happen to my mother if she was taken of this medication so would be inhuman to take her of this medication . His words not mine .

So it does make me wonder that when in a care home , does the person still keep the same doctor that they had when they was not in a care home full time ?

Or do all the people in the care home have the same doctor ?

 

[jenniferpa]

I think that will vary Maggie. If the care home you move into is still in the catchment area for your existing GP then you can definitely stay with that GP. If it's not though, you'd have to change doctors just like you would if you moved. I imagine that most people in a care home will have the same GP because of 1) logistics (my mother's GP would come to the home to make calls) and 2) interest (my mother's GP was more interested in geriatrics than many GPs). Still no one can force someone to change doctors if they remain in the doctor's area.

 

[Margaret W]

Hi Deborah

As a relative, you really have no right to even know what medication your mum is on. I was in that position, too, and as her next of kind and only real relative I wanted to know everything. Most doctors recognise this, but I have to say there were occasions when mum's medication was changed and nobody told me. I felt Aricept was good for mum, but I learnt by chance that it had been stopped and I feel she went downhill from then on. Working full time, I never managed to get an appointment with her GP, so I never found out why it had been stopped, and she died two weeks ago with me still not knowing. I suppose it is immaterial now, but if you can get the GP to explain it to you, I would do so.

Hope you have success, cos you need to know.

Margaret

 

[Margarita]

Thanks for that information Jennifer.

My chemist could not get the medication in on time , even thought I order if within a week before the medication run out , so my mother never had it for a 4 days , I never notice much change . just more hypo , then compared to when she does take it . But to think of the long team without them is very scary thought for me to think about.

Keep strong Deborah . please let us all know what the doctor has to say about it all in stoping this medication .

 

[alfjess]

Hi

Dad had Aricept and in the beginning it was great and I am sure that it held of,the deterioration,for a few years

Unfortunately,dad collasped and when taking him to A&E it was dicovered that his heart rate was very slow

Aricept was stopped immediately and I'm sorry to say that his dementia deteriorated quite quickly.

He still has a slow heartbeat, not as slow, but he is still very confused.

I think it is a trade of, what do we want for them???

Sorry
Alfjess

 

[Margaret W]

Dear Alfjess

A trade-off, what do we want for them? What a question friend. Primarily we want them to be comfortable in life, if we can also have some interest and liveliness that is brilliant, but if they are beyond that, then it is just comfortableness. If we can prolong life that is also important. That might mean pain relief, tranquilizers or whatever. Hard to advise without being morbid, but really being comfortable and pain free is more important than anything.

Having just cremated my mum, I am not really in a fit state to be listened to, so just ignore me, I am too emotional.

Love

Margaret

 

[DeborahBlythe]

Dear friends, so many kind and thoughtful and speedy replies, I don't know how to thank you all.

I managed to get a call from the GP yesterday, ( rather ill-timed as I was about to sit an exam, but I wanted to get things off my chest.)

He said, rather defensively that he didn't know why he HAD BEEN prescribing the Aricept. " I'm not supposed to, it's supposed to be done by a psycho-geriatrician." I told him gently that the reason he was prescribing the drug was because she had been on it from her transfer and admission to the home two years ago. He had continued her drug regime as it had been handed on. I told him the drug was acceptable to my mum and that she had appeared to benefit from it, was on a plateau mentally (and physically now) and that to withdraw it might tip her into a decline. " But I'm not supposed to" he whined. (No mention of adverse reactions with other drugs, or conflicting medical conditions.)

" I can refer her to a psycho-geriatrtician if you like" he offered, "but I don't think she will qualify for Aricept under the NICE guidelines." I asked him to do so. He denied that the drug should be tapered off. " No, it doesn't have to be.She is on the lowest dose anyway." He didn't know how long she had been on it and had to ask me. I told him I thought it would be counterproductive to stop it because I thought it may have helped to slow down the progression of her AD.

I said, well perhaps, she could have it on alternate days? He wouldn't accept this.

I tried to stay strong, Maggie but I ended up, after he rang off, crying like a little girl.

It goes without saying that I want my mum to be comfortable and have striven very hard to ensure that she is. My belief is that the Aricept was sustaining her. I have thought about whether we could afford to buy the drug privately but I doubt whether the home would be able to administer it without the GP's consent, Joanne.

It's her birthday today. I have to go now. Thank you all for your support. It means so much to me.
Love Deborah xx

 

[Grannie G]

Dear Deborah.

I`m so sorry.

And just how long has your mother been on Aricept and maintained the Status Quo whilst on it? And what made the GP suddenly decide?

Doesn`t it make you sick and tired of change for change`s sake, not because it has been found to be necessary .

Happy birthday to your mother.

Love xx

 

[Margarita]

So am I sorry ((hugs))

I tried to stay strong, Maggie but I ended up, after he rang off, crying like a little girl.

Just because you Cry does not mean that you are not a strong person Or a little girl, because you cry . Crying is just an over flowing of emotion showing that you care .

Sending your mother my best wishes on her birthday.

 

[Skye]

He said, rather defensively that he didn't know why he HAD BEEN prescribing the Aricept. " I'm not supposed to, it's supposed to be done by a psycho-geriatrician."

Dear Deborah, I think the GP may have been right in that. It's probably another thing that varies from area to area, but in my experience, GP practices aren't funded for AD drugs, it's the mental health team that has the funding. So it might be worthwhile to ask for a referral to a psych-ger.

When we moved here, the GP continued all John's meds, including Reminyl. When we eventually got an appointment with the psych-ger, he started to write out a prescription, and I said we'd got one from the GP. He said "That's very generous of him, he's not funded for it."

As for crying, I'm not surprised. It's the fact that we have to fight for everything for our loved ones, and so often find we're bashing our heads against a brick wall that is so frustrating and depressing. We haven't the strength or nervous stamina for fights, and we end up completely drained.

I hope the birthday goes well.

Love and hugs,