My mom is getting worse, remembers for about 30 seconds asks again. When I can't stand it any more I try to change the subject. I'm wondering if we should just take her off these meds. Dr suggested increasing dosage but since I have never seen them really help in the past 2 years I said no. Thoughts?
But, of course, we really don't know if it was the Aricept or if he would have improved just the same without it.
I think it has been well established that none of the dementia drugs delay the progress of the disease. There was a very large study done in England on this topic. I think they were trying to do a cost/benefit decision. If this drug really did keep people out of care centers longer it would be well worth its cost. But it didn't. :(
But my question would have been, does the drug improve the quality of life of the people who take it, until they need professional care? It apparently did for my husband. Shane, my advice is just what you would do: Give the drug a fair trial, continue if there is improvement. If not discontinue. Even if they work for even 3% of the population, isn't it worth finding out if your loved one happens to be in lucky minority? You'd have better odds than entering a lottery. :)
And as to the question about whether any dementia drug prolongs life I don't think there is any evidence of that, and the drug companies don't make that claim.
Many doctors prescribe Aricept for any kind of dementia, in the hope it might help. And, after all, many times a person with another kind of dementia also has some ALZ. This is called using the drug off-label. This is widely done with drugs for other things, too.
There is NO drug on the market that slows the progress of the disease. After all, science does not fully understand what causes the progression -- how could they know how to stop it? The initial hope was that Aricept might do this. It doesn't.
Aricept MAY improve some of the symptoms of dementia. It did for my husband. If it does, it is worth taking off-label. If it doesn't, there is no point in taking it at all. If it works for a while but then stops, take it for a while and then stop. Insurance companies seem to accept this reasoning. They don't say "we won't authorize this drug unless you have a diagnosis of ALZ." (And they do say that about some off-label prescriptions.)
If a doctor prescribes Aricept off-label, please recognize that as compassion, not ignorance. It MIGHT help, and people with this terrible disease deserve any chance of help that is out there. But there is no point in taking the drug if it doesn't seem to help.
REF. going off the med if it doesn't work. I'm not sure how that works and if it's that simple.
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The meds really have no studies to show that they are effective in Vascular or other dementia, just Alzherimers, to my knowledge. So, when the psychiatrist, who is treating my LO, who has VD, suggested that it might be an option, I was rather surprised. My LO has what he calls PROFOUND dementia. Stages 6/7. LAST Stage. Even if it did work, why would someone at that level want it? I don't get it. I have not agreed to it, for one, she has a very sensitive stomach and being fully incontinent, I don't see how giving her something that will upset her stomach is kind. Plus, she can no longer articulate how she's feeling, so, we won't know what it's doing to her with side effects.
Has anyone heard of a person in the final stage of dementia taking these meds?
There is no way you can predict a decline.
There is no way you can tell how fast the decline would have been with or without the medication.
And to top it off at a certain point the medication will no longer work. The decline has gotten to a point where the meds will not help, if they were to begin with.
All you can do in your best judgement is make a call.
There is no right or wrong decision here.
Yes there will be a decline but will it be faster than before or not? No way to tell.
There is nothing that will reverse the dementia so even if a cure came tomorrow there will be, for many of us, the slow decline of our loved one.
So ultimately it is your decision to take her off the medications. The result will be the same on or off the medications it is just a matter of time.