Stopping Donepezil in late stages

buttercups

Registered User
Dec 31, 2015
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My mum is in the late stages of Alzheimer's, stage 6 I guess. She's been very agitated for some time. Her consultant is now wanting to try stopping her Donepezil ,which she has been taking for 6 years, thinking it might help with agitation??
Anyone have any experience of doing this? Consultant said if no difference in few weeks we will try her on Memantine?? Seems a bit of a waste of time to me.
Thanks
 

nitram

Registered User
Apr 6, 2011
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Bury
My wife's progress was best measured in months rather than years, my opinion is try the switch, for me it was beneficial.
 

buttercups

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Dec 31, 2015
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My wife's progress was best measured in months rather than years, my opinion is try the switch, for me it was beneficial.
Thank you Nitram, can I ask at what stage did your wife stop the Donepezil.? Did she start memantine straight away?
Thanks
 

nitram

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Apr 6, 2011
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Bury
I don't subscribe to stages so can't answer the stage query.
I worked on presentation 'now 'compared with some identifiable past time making allowances for acute events.

Donepezil was just discontinued and Memantine titrated

https://www.medicines.org.uk/emc/product/7346/smpc
At the time titration packs were not available and the dispensing pharmacist had problems, it took time to convince her to work everything out in half tablets.
 
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Linbrusco

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Mar 4, 2013
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Auckland...... New Zealand
My Mum was diagnosed with Alzheimers in 2013. She has been on 5mg of Donepezil since.
10mg gave her an upset stomach.
Mum has been a care home since July 2016, and has declined drastically since Sept last year, so now stage 7.
Gradually lost all mobility, eating & drinking greatly reduced, talking little and mainly sleeping. Infections becoming more often. Was very difficult to get her to take tablets due to not eating.
Psych nurse suggested withdrawing Donepezil as it could now be upsetting her stomach, as she was still on low dose Quetiapine for agitation & being combative with staff during cares.
Mum was also moved from Dementia Care to Hospital level care.
Mums appetite increased ever so slightly and has shown no other cognitive decline.
She hasn’t shown any agitation, so they have reduced the Quetiapine to just 12.5mg at night.
In Mums case we have seen no marked detriment.
 

buttercups

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Dec 31, 2015
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Thanks Linbrusco.
My mum was also diagnosed 2013 and is slowly going downhill.
Would you say that stopping the donepezil may have helped with your mum's agitation? My mum is on olanzapine for agitation.
It's a nightmare watching them decline isn't it?
Glad your mum's appetite has increased a bit and you have been able to lower her quetiapine. Good luck.
 

KathrynAnne

Registered User
Jun 6, 2018
269
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South Yorkshire
My Mum was taken off donepezil after scoring very low on her test at the memory clinic. We had to decrease the dose and then we immediately started her on memantine. The dose of memantine was gradually increased until she was on 20mg. My Mum continued to take memantine latterly in the liquid form until she passed away 2 weeks ago.
I was never convinced that either drug affected Mum’s symptoms but obviously I could not compare this with how she would have been without them.
 

buttercups

Registered User
Dec 31, 2015
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I understand it's really hard to know if the drugs are working.
So sorry your mum has passed. You must feel so many emotions, I'm sure one if them is massive relief the nightmare is over. But I'm sure you miss your mum massively.
My mum is deteriorating every day and, mostly for her sake, I wish she would pass, she is never content, constantly agitated and worried. Horrendous illness.
 

KathrynAnne

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Jun 6, 2018
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South Yorkshire
I understand it's really hard to know if the drugs are working.
So sorry your mum has passed. You must feel so many emotions, I'm sure one if them is massive relief the nightmare is over. But I'm sure you miss your mum massively.
My mum is deteriorating every day and, mostly for her sake, I wish she would pass, she is never content, constantly agitated and worried. Horrendous illness.
Thank you @buttercups. You're right about the many emotions. Relief that the suffering is over and guilt that I feel relieved! The funeral is on Wednesday and the good thing is that my brother and I have written about Mum and it has brought lots of lovely memories back which were made before dementia. Good luck with your journey. Cherish the few lucid moments xx
 

buttercups

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Dec 31, 2015
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Thank you @buttercups. You're right about the many emotions. Relief that the suffering is over and guilt that I feel relieved! The funeral is on Wednesday and the good thing is that my brother and I have written about Mum and it has brought lots of lovely memories back which were made before dementia. Good luck with your journey. Cherish the few lucid moments xx
 

buttercups

Registered User
Dec 31, 2015
26
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Aw that's so nice. You can just remember your mum before dementia robbed you all of her. Please try not to feel guilty. If your mum could communicate one wish to your I'm sure it would be to get rid of the guilt.
Good luck with the funeral