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dldykstra Asked November 2023

Did anyone discontinue Donepezil and see rapid changes in their loved one?

My mom has significant short term memory and attention issues, but still good thinking, problem solving, and conversational skills. Several medical professionals have suggested she stop taking the donepezil as she has been on it for 8 years. Has anyone done this and noticed a rapid change in mental abilities?

Taarna Dec 1, 2023
Seems this medication is working for her. Ask medical personnel why they want to take her off the medication: liver issues, kidney issues, serious side effects...? Those are legitimate reasons to consider stopping.

97yroldmom Nov 29, 2023
The change I noticed was positive. Aunt, 97, dementia had taken for years. Stopped to see what would happen. She appeared more lucid, not as drugged up.. but I’m not sure that’s all good either. She can clearly see she is now bed bound and in a nursing home. She doesn’t complain. Not to me anyway. I think she gives some of her aides a blessing now and then. It just seems she is more aware. Not easy to make these decisions.

Oh I wanted to add when aunt will have a conversation she is still is very thoughtful and relevant. I said something about a decision being someone’s choice to make. She commented. ‘Sometimes we choose wrong.” To me that was full of meaning for someone 97 with dementia for 10+ years.

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Llamalover47 Nov 29, 2023
dldykstra: Stopping Donepezil abruptly is not recommended by several websites, but as always, you should pose your question to your mother's physician.

ElizabethAR37 Nov 28, 2023
Burnt: Wonder if that client and her family had decided on VSED? I just finished reading two handbooks on that subject, and in those cases hunger, thirst and anxiety were mitigated (reportedly) as well as pain. IMO, Americans should have more Final Exit choices--short of a pricey trip to Switzerland--but there aren't many, so people are compelled to consider "all" options.

Grandma1954 Nov 23, 2023
The Support Group that I now co-chair was started by a woman that did say that she noticed a marked decline in her husband when he went off the Aricept / Donepezil. She had him restart it
When my Husband went on Hospice I chose to discontinue the medication I did NOT notice a decline, other than what he had been experiencing as a "normal" decline. He had been on Aricept for about 9 or 10 years, he was also prescribed Namenda at one point but there was such a change in personality and functioning that I titrated him off.
The medication is supposed to slow the decline and is typically prescribed early in the diagnosis.
There are other "newer" medications that might be effective later.
The kicker as I see it is once the medication is started do you actually know for sure if it is working. how would have the decline been without the medication. And if you discontinue it how do you know what the decline would have been like with it.
Now if the decline is dramatic once you go off the medication then yes I would see a connection and restart the medication. But if the decline is gradual you really don't know.
So I suppose the only way to find out what would happen is to discontinue it and monitor. Find out the proper way to discontinue and be prepared to restart if you need / wish to.

Geaton777 Nov 22, 2023
"Does donepezil need to be tapered off?

Suddenly stopping donepezil could harm your health. The medication's positive effects may reverse and symptoms may worsen. Your doctor might give a tapering dose if you need to stop taking donepezil. This tapering dose will manage your withdrawal effectively."

Source: https://healthmatch.io/medications/donepezil#allergy-information

More info about it here:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3506829/

This seems to be a medication that should not be suddenly stopped.

BurntCaregiver Nov 2023
If your mother has been on it for eight years and she is doing well, don't take her off it. It won't cure her dementia and at some point she will get worse, but it slows it down.

I had a homecare client who was on it for years. For some reason nursing came on the scene then insisted on hospice, God only knows why.

Long story short, she was taken off the donezepil and within a few days she became non-verbal, unable to feed herself, and developed a bad difficulty swallowing. She lived in this condition bedridden for three years.

Don't take your mother off the donezepil.
NeedHelpWithMom Nov 22, 2023
How sad, Burnt. I am sure that you saw many changes in people who were taken off meds and changes in people who were placed on meds.

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