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Shall I discontinue n5mg of Aricept as no benefit has been found at all.

Mrs Humphrey

Registered User
May 14, 2021
41
0
I get no help on this from the Memory Clinic. My husband is on 5mg of Aricept which could not be increased as his heart rate would be too slow. He has been on it since February 2021 but it has never seemed to be of any benefit and his dementia is getting worse week by week including having the occasional seizure and now being incontinent at night and occasionally during the day . His confusion is extremely bad now and his walking is very wobbly. He is not aggressive or agitated. Is there any point in continuing with this drug as it has never shown any sign of being of any use to him at all.
 

lollyc

Registered User
Sep 9, 2020
593
0
As I think I have said before, we stopped Mum's Donepezil because of other side effects. I Can't honestly say it made any difference at all. She has deteriorated, which is inevitable. It's impossible to say whether the medication would have slowed the progression, as who knows what that progression would've been anyway?
 

ClaireeW

Registered User
Sep 22, 2021
31
0
Our dementia nurse said that they just carry it on regardless. I've noticed no difference at all with Mum (although the 10mg strength just gave us a solid week of crying, so I reduced it to 5 again). It seems completely pointless to me. The argument is that they decline if you stop it, but my argument is, if there's been no difference and they then decline, so what? Why is everyone so determined to prolong this living hell?
 

lollyc

Registered User
Sep 9, 2020
593
0
Precisely. And as no-one can predict the trajectory of any dementia, how do they know it isn't progressing exactly as it would have - drugs or no drugs. Anyway, the side-effects caused us even more problems, which I really didn't need.
 

Jaded'n'faded

Registered User
Jan 23, 2019
2,237
0
High Peak
Our dementia nurse said that they just carry it on regardless. I've noticed no difference at all with Mum (although the 10mg strength just gave us a solid week of crying, so I reduced it to 5 again). It seems completely pointless to me. The argument is that they decline if you stop it, but my argument is, if there's been no difference and they then decline, so what? Why is everyone so determined to prolong this living hell?
Well, that's a very good question. Dementia is going to kill you (unless you die from something else first), no matter what drugs you take. It is terminal - end of story. My mother was never offered any drugs but I had her living will which expressly said she did not want to prolong her life if she lost capacity. We often discussed such things within the family (a long time before dementia arrived) and mum was very clear - why on earth would she wish to continue living if she'd lost her mind?

I suppose if your loved one is in the early stages you might feel quite desperately that any drug that gives them a bit longer 'as themself' is a good thing. I entirely understand that. But once the person is well into their dementia journey, is it right to make that last longer? If you had a beloved pet in that condition - struggling with mobility, incontinent, unhappy and unable to live any sort of normal life, would you say yes to pills that might keep them like that for an extra 6 months/a year, knowing they were going to get worse and die anyway?

In mum's case, she had mild dementia then a fall, hospital and a sudden, rapid decline that meant she had to move to a CH. She was so completely 'gone' that I would have refused any drugs like donepezil/aricept. She lasted another 3 years before dementia ended her life. There wasn't much else wrong with her and her death certificate states 'dementia'. It was three awful years and I wouldn't have wanted it to last a day longer.
 

karaokePete

Registered User
Jul 23, 2017
6,279
0
N Ireland
I think the important thing to bear in mind with these Alzheimer's drugs is that they don't cure or slow the underlying disease. They simply produce a brain chemical that helps the brain deal with some of the symptoms in the case of some 40-70% of people who take them(so up to 60% of people won't demonstrate any benefit at all). When my wife first started on these meds she seemed 'brighter', but the disease continued to progress and that 'brightness' is no longer seen. I wouldn't want the med stopped as she very clearly demonstrated some benefit at the start of treatment so that may be continuing - even though no longer obvious.

The disease isn't slowed, or stopped, it's just that the person may be able to deal better with some of the symptoms, which can help with anxiety etc., as well as the symptoms themselves. The lifespan isn't prolonged.

For myself, I wouldn't see any point in using a med if it has never produced any benefit. Having said that, I think stopping a med should always be discussed with the GP so that the situation can be monitored.
 

Jaded'n'faded

Registered User
Jan 23, 2019
2,237
0
High Peak
I think the important thing to bear in mind with these Alzheimer's drugs is that they don't cure or slow the underlying disease. They simply produce a brain chemical that helps the brain deal with some of the symptoms in the case of some 40-70% of people who take them(so up to 60% of people won't demonstrate any benefit at all). When my wife first started on these meds she seemed 'brighter', but the disease continued to progress and that 'brightness' is no longer seen. I wouldn't want the med stopped as she very clearly demonstrated some benefit at the start of treatment so that may be continuing - even though no longer obvious.

The disease isn't slowed, or stopped, it's just that the person may be able to deal better with some of the symptoms, which can help with anxiety etc., as well as the symptoms themselves. The lifespan isn't prolonged.

For myself, I wouldn't see any point in using a med if it has never produced any benefit. Having said that, I think stopping a med should always be discussed with the GP so that the situation can be monitored.
Thanks for that explanation Pete - I didn't know that. I thought the drugs were given to slow the onset of new/worse symptoms, i.e. keep the person at the stage they are at for a while longer, but merely delaying the inevitable.
 

jugglingmum

Registered User
Jan 5, 2014
6,087
0
Chester
Why is everyone so determined to prolong this living hell?
When my mum first took it it definitely made her brighter and less anxious and more able to cope, she had a few mores years with a reasonable quality of life (living arrangements helped)

Now 7 years on whilst she is happy in herself she moves from bed to sofa and eats some food, she can barely interact due to deafness - she can read what I write but loses patience as my writing is too slow. She is a long way off some of the PWD cared for by members but I know her former self wouldn't want to be like she is now.

So it did work to start with and was worth it. There is precious little to help and if it is still reducing anxiety for my mum it is worth it.
 

lollyc

Registered User
Sep 9, 2020
593
0
Thanks for that explanation Pete - I didn't know that. I thought the drugs were given to slow the onset of new/worse symptoms, i.e. keep the person at the stage they are at for a while longer, but merely delaying the inevitable.
I don't think anyone explained it that way to me.

Mum doesn't have a specific diagnosis, and I think they were just giving it a try to see if it made any difference. It didn't, and the side effects were a real issue.
Unless the improvement had been dramatic it wouldn't have outweighed the negatives, and I'd have made the same decision.
 

Countryboy

Registered User
Mar 17, 2005
1,667
0
South West
Hi Mrs Humphrey If your husband is prescribed Aricept that sounds great, I was prescribed Aricept in 1999 however I was told in January 2020 by GP surgery and Chemist that they couldn’t get the Aricept owing to covid situation and was give the cheaper equivalent Donepezil and was assured it was the same personally I don’t believe that I think it was all about cost :( but anyway today I taking the Donepezil which means I have on the drug Aricept or Donepezil for almost 23 years do I get agitated or aggressive possibly :D but all my life I been like that nothing to do with Dementia if fact sine I’ve had dementia I’ve mellowed or perhaps it’s because of old age :p ( I can stiil put a good fight if necessary ) ;)
 

RuralTownie

New member
Oct 11, 2021
8
0
We saw no obvious benefits from Aricept, but the side effects (incontinence) were significant. Our Memory Told us to stop and we've just started Memantine instead. Too early to say what the effects are, but perhaps it's worth talking to your Memory Team about this one?
 

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