Newly diagnosed husband and now Donepezil

[canary]

we jumped at the ‘slowing down’ argument but it’s impossible to tell whether it did slow it down

Donepezil doesnt actually "slow down " the Alzheimers - what it does is stimulate the brain so that they are able to make better use of what they have, so it appears to slow down the development of symptoms. Underneath it all, though, the Alzheimers is still progressing at the same rate.

The side-effect of agitation/aggression happens because the brain gets over stimulated by the donepezil. There is also the point that it can be very difficult to pin point exactly what type of dementia it is and donepezil only works for Alzheimers. So if its not actually Alzheimers, but FTD or LBD, for example, then donepezil wont work.

 

[update2020]

Donepezil doesnt actually "slow down " the Alzheimers - what it does is stimulate the brain so that they are able to make better use of what they have, so it appears to slow down the development of symptoms. Underneath it all, though, the Alzheimers is still progressing at the same rate.

The side-effect of agitation/aggression happens because the brain gets over stimulated by the donepezil. There is also the point that it can be very difficult to pin point exactly what type of dementia it is and donepezil only works for Alzheimers. So if its not actually Alzheimers, but FTD or LBD, for example, then donepezil wont work.

Really helpful. Wish I’d known that at the time. ☺️

 

[Donk1]

It is so difficult to tell isn’t it. All I know is soon after OH started on 10 mg he knew who I was, (after thinking I was someone different for a few minths), he stopped talking about seeing his dead mother and ex wife at our house. As far as I can tell he has not had any side effects. But who knows if all this would have happened without the medication. Maybe you just need to try it.

 

[mojogirl]

As you have seen everyone’s experiences are different . As were ours. In our experience Memantine had worse side effects (agitation, aggression) than Donepelzil though after four years one professional did say that my husband’s agitation ‘might’ be worsened by the Donepezil too. What I never researched (but would now) is what would happen if he took nothing. He was around dozen years younger than your husband so we jumped at the ‘slowing down’ argument but it’s impossible to tell whether it did slow it down. I’m unconvinced.

hi seaswallow...yes i would think age has something to do with it...my husband was diagnosed just a few years before he passed away at 73...my research has taught me that i am sure he had it at least 10 years...symptoms can be difficult to nail down until they are well into it...good luck with the meds...but sadly in my opinion until we have a cure...not much helps.

 

[MissFloopster]

Hi all, my 69 year old husband was diagnosed end of may and today had been given Donepezil to start on 5m. I feel a little unsure of any real benefits versus side effects, so seeking some views on this please.
Thank you in advance
Lesley

Hi Lesley, my husband was diagnosed early in the disease and was given Donezepil also (the brand name here is Aricept), starting at 5 mg to see how he would react and then went on to 10 mg. For him, I definitely saw an improvement: he become more engaging and more alert. I cannot remember if there were side effects when he started taking it (which is probably an indication there weren't any). As the disease progressed, those improvements disappeared though. But I definitely saw improvements in the early stage (beginning 2021).

 

[GD11]

Hi all

interesting reading here as im having questions about Donepezil myself recently

my wife has FAD and is now 50yo,she has been on Donepezil for a year now

initially it seemed to work well and even seemed to dispell anxiety and then things settled down and we were happy enough

Then in feb we went on a 2 week holiday and despite all the checks etc we done we forgot the bag the donepezil was in so she had to go without. In this time i noticed a huge change esp in the 2nd week and she was completely withdrawn.I cannot say for sure if it was missing the medication or just the strange sorroundings.When we returned and got back on the meds then it seemed to settle back down and she was more at ease again.

Only 4 weeks ago we set off on another trip for 2 weeks and low and behold forgot the donepezil again.
This time it had the opposite effect and after a few days my wife really came out of herself and it was like having the old her back again.She was talking away and making jokes and full of life again.
When we returned and she went back on the Donepezil again after about a week she completly fell of a cliff.
Huge changes for the worse.
She now believes anyone on tv is in our room and also wont let me touch her as in hold hands or give her a peck on the cheek even.She is not agressive about it but just pulls away and says nothing.

Im not sure if its Donepezil related or not but boy its very frustrating

 

[Simon Penn]

Hi all, my 69 year old husband was diagnosed end of may and today had been given Donepezil to start on 5m. I feel a little unsure of any real benefits versus side effects, so seeking some views on this please.
Thank you in advance
Lesley

My wife was diagnosed with Stage 1 AD in July and placed on 5mg Donepezil. She has always been very resistant to any forms of medication, and soon complained of 'feeling sick'. Whether this was a real feeling or not I can't tell. She wasn't sick and it all disappeared immediately. What my wife did have was vivid dreams, sometimes very unpleasant ones, particularly when the dose was increased to 10mg. We discussed this with her Dementia advisors who both recommended she changed the timing of taking the medication from the prescribed late evening, to morning. My wife was very unwilling to 'go against' what it said on the packet, whatever two medics had recommended, but relented in the end. Result: no more nightmares. Stick with it, is my advice.

 

[David Joseph]

Hi All,
I was diagnosed in early August with mild Alzheimer’s, and knew it would be good to get treatment early, even it’s not a cure. I’ve only been on 5 mg dose and probably won’t be able to go higher because of another illness. I’ve only been on this med for ten weeks, but it’s helping already. I am better focussed during the day and doing what has been advised —- living as best as one can, hoping for the best. There’ve been some mild side-effects, most notably vivid dreams that seem almost life-like, with people I’ve known talking to me and on several occasions helping me to stay positive. I am 79, and have had symptoms for at least several years, thinking it was only old age. That was a mistake!
David Joseph

 

[canary]

Hello @David Joseph
Its good to hear such a positive post.
Im glad you are finding donepezil helpful
xx