Should I approve my mum taking ARICEPT

[Catmum]

Hi Folks,
I hope someone can give me a steer as my mum has only just been diagnosed with Alzheimer’s (based on an assessment, but without MRI). Mum is 89 and has been a bit scatterbrained all of her life, so I’m well used to her losing keys, missing planned appointments etc. Nowadays I can see she’s a bit more forgetful i.e can’t remember what she had for dinner yesterday, or what day it is. However, she looks after herself well, her house and garden are spotless and well kept and both she and her 2 little cats are well fed. Historically, mums system doesn’t react well to taking meds, she very often develops side effects and having had a look at ARICEPT I’m worried the cons may outweigh the pros. My mum also suffers from simple fainting (a condition caused by fluctuations in blood pressure - resulting in her passing out) and again I wonder if this would be aggravated by the medication. My mums consultant has suggested that I research the net and let her know whether to proceed with the new treatment. I just don’t want to make the wrong choice - so any help would be greatly appreciated. Thanks in advance

 

[canary]

Hello catmum and welcome to Talking Point.
Most of the side affect only last a few weeks and my mum took Aricept (donepezil) without problems up until her death from Alzheimers, but I can understand your concerns.
Currently, there is no other treatment for dementia - it does not cure it, it does not prevent it developing, but it does slow down the progresion. It only works for Alzheimers too and not always then, but as I said, there is no other treatment. As it works by slowing down the progression (not halting or reversing any damage) it is best to introduce it as early as possible , before damage is done.

Could you try her on it and see how she tolerates it, especially as she is in the early stages? It is usually introduced at a reduced rate of 5mg a day and then if all is well after a few weeks the dosage is upped to 10mg. Some people find that 5mg works, but the increase is not tolerated and they are better if the dosage is reduced down to 5mg again

 

[jaymor]

Hello and welcome Catmum,

My husband took Aricept from when he was diagnosed at 62. He continued to drive and work for the next four years. He had no side effects at all and I believe it gave him those four years of stability. Of course he might have remained stable without the Aricept, this disease is really a difficult one to understand when everyone progresses so differently but I believe it is worth a try.

I feel your consultant has not been very helpful, they have the experience and should be able to guide you. They can’t be definite it will help until it is taken but they should be able to tell you if the problems your Mother already has, health wise, will be affected by Aricept.

 

[karaokePete]

My wife was started on Donepezil 5mg, increasing to 10mg after a few weeks, as soon as she had her Alzheimer's diagnosis and did not suffer any real problems, unless she took it in the morning when nausea became an issue. I was left with the impression that taking it before bed meant that the body got used to it while asleep and didn't have issues by the morning.

My wife's Consultant did say that there may be side effects when starting the treatment but to bear with it as the problems would ease. As it was, the problems didn't arise and I think the medication has been very good.

 

[Izzy]

My experience is similar to Pete's. My husband was diagnosed in 2001 and was put on Aricept right away. He never experienced any side effects. He remained on this drug for about 10 years or so then it was eventually changed to Exelon which is the same type of drug. It was only it was only in his last 2 years or so that he was completely taken off the drugs. I believe he had benefit from them and I was never prepared to take the chance of doing without them.

 

[LynneMcV]

Hi Catmum and welcome

It's always hard trying to decide on the best way forward for our loved ones isn't it?

Unfortunately, it's the only drug available that will slow the progress of the disease so, in my opinion, it would certainly be worth trying it.

All medications have side effects but not everyone will necessarily experience those side effects.

In my husband's case, he has a slow heart rate -and so it was decided not to progress him to the normal 10mg dosage as this drug is known to lower the heart rate - and it would have led to him passing out. However, he was started on the lower 5mg in May 2012 and still takes that dosage today.

He has had no side effects from the medication, and the progress of the disease was slow until we got four years into it. I cannot be 100 per cent certain, but I feel that it did help keep things slow moving and his abilities in tact during those early years.

Had my husband not taken well to the medication he certainly would not have been kept on it. The same would apply for your mother

 

[Beate]

It's the only medication there is, basically, and while it won't work wonders or work forever, it's better than nothing. You will never know which side effects she might (or might not) experience unless you try, so let her try it. It's usually given in a smaller dose for the first four weeks anyway to gauge reactions.

 

[Amy in the US]

Hi, catmum, and welcome to Talking Point.

I have no personal experience of this medication, as my mother's Alzheimer's was diagnosed far too late for her to get any benefit from it, but know many people here on TP and in my other support groups who have PWDs (persons with dementia) on it.

As others have said, it won't cure the dementia, but may slow things down, and there aren't really other options.

There is no way to know what side effects she may or may not have, unless you try. Of course, there is also no way to know if it will help or not.

I agree that the consultant is not being helpful, telling you to do an Internet search. They are meant to be the experts and offer guidance! Again, it's not possible to predict what will happen.

I would, however, raise the BP issue with the consultant and not only would I ask the doctors specifically about the new medication in regards to the BP issue, but also would insist that she get properly monitored/checked out for that. My mother's neurologist says that BP problems, especially orthostatic hypotension (where your blood pressure drops suddenly when you go from being prone to sitting up and/or from sitting to standing), are more common in dementia patients than the general elderly population and so it's worth keeping an eye on this. Sometimes postural, or orthostatic, hypotension is caused by a medication or an underlying physical problem of some sort, and dehydration can make it worse, so it's good to make sure all her doctors know about it. It's a risk factor for falls, which you don't want, of course.

Again, welcome to Talking Point, and wishing you and your mum all the best.

 

[Kevinl]

It's the only medication there is, basically, and while it won't work wonders or work forever, it's better than nothing.

I agree with Beate, it's the only thing that may help her maintain a better quality of life for longer.
They did do a trial and it showed people on Donepezil (which is probably what they'll prescribe) stayed out of care homes for longer than people not taking it, given that a care home could cost £30,000pa if it keeps her out of care for just one year it'll save her a fortune.
My wife took it for 6 years and had no adverse effects, she did to some of the other medications but the Donepezil was fine.
It's very much in her best interest to try it, unless she's in a rush to go into a care home.
K

 

[Catmum]

Folks,
I’ve just picked up all your helpful and supportive responses. I really do appreciate it and can’t thank you enough for taking time out of your busy days to pen a reply. I plan to talk this over with my mum recommending she gives it a try, explaining that initially she might have to persevere until her system gets used to it. You’ve all really given me hope. Thanks again

 

[Izzy]

Let us know how it goes @Catmum.

 

[Lawson58]

My OH was initially prescribed donepezil for Alzheimer's but found that he had side effects from it , mainly tummy troubles. The consultant changed him over to rivastigmine (Exelon) patches and he has done very well on that for the last two or so years but is slipping now.

It has been a very good alternative to donepezil and considering his serious cardiac conditions he has tolerated it very well. He stayed calm most of the time. It has the advantage that being in patch form, it isn't absorbed through the siege strive system.

 

[Catmum]

My OH was initially prescribed donepezil for Alzheimer's but found that he had side effects from it , mainly tummy troubles. The consultant changed him over to rivastigmine (Exelon) patches and he has done very well on that for the last two or so years but is slipping now.

It has been a very good alternative to donepezil and considering his serious cardiac conditions he has tolerated it very well. He stayed calm most of the time. It has the advantage that being in patch form, it isn't absorbed through the siege strive system.

 

[Catmum]

Many thanks for your sound advice, I think the patches will be a good alternative for the aricept if it causes problems. It’s such a horrible disease, I can see my mum trying so hard to figure things out but she just can’t. . I just can’t imagine how difficult this must be if your partner is affected.

 

[malengwa]

Mum was on this but suffered terrible itching which then inflamed her skin as she scratched so much. I think it was too late for her to gain any benefit although we will never know for sure but she refused to take it anyway. She wasnt considered to be lacking capacity at that point so we couldn't make her take it. So the jury is out for me.

 

[Lawson58]

You need to make sure that the patches are changed every day and that you put them in a different place each time. Like most of these things, they can cause problems but are less likely to if they are used correctly.

 

[Catmum]

Hi Folks,
Since my last post, my mums dementia doc has advised that she ought not to start on Aricept as her last ECG showed she had a slow heart rate. We also discussed memantine and again, doc recommended we don’t start these either as the drug doesn’t actually slow the progress of the disease. So, I’m torn. I was so worried about Aricept, as with mum suffering from simple fainting, her episodes of passing out might increase, but now I’m thinking have I made the right decision. My husband says we should give mum every chance and no one knows her better than we do; she might look frail, but she’s a tough old bird. My mum is having a CT scan scheduled, so I will have the opportunity to speak to her doctor again.
Any advice gratefully received.