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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?

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Shane1124, Aricept seemed to help my husband a lot. (So now you have heard at least one person who was helped.)

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.
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All very good answers. I'm a nurse and haven't heard any one of my patients say those meds have helped their loved ones. Many docs I have worked with say they do not work. I myself would probably give them a trial for several months and if no improvement noted, I would discontinue them. Good luck!
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Aricept was developed and approved for ALZ. For it to be approved for other kinds of dementia it would have to go through the time-consuming and expensive FDA testing process all over again. If it were a wildly successful drug perhaps that would be worthwhile. As it is, that time and money is probably better used researching new drugs.

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.
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Yes, I'm trying to figure out why a doctor would even suggest it for someone is in the final stage, wheelchair bound, in need of total care, does not resist care, etc. It's odd. I stressed my disapproval, but, he said we would visit the issue later if necessary. WHAT? I guess, I'll wait and see what he's talking about, but, I have no intention on doing that to her.

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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(I meant to say 'when she was on 'them' a few years prior, this was in reference to vitamins and supplements somebody thought she ought to be taking. A relative swore up and down Vitamin D, Vitamin B, all kinds of vitamins and supplements would be useful. Well, no, duh, not any more than expensive prescriptions, as it turned out!
)
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Hard to say how well they really work, or if they even do work. They are prescribed for any diagnosis of 'dementia' and maybe they DO hold it back for a while. Who really know? I think these drugs are just automatically prescribed as soon as the diagnosis comes along. But again, there is no proof they hold back dementia. My mother finally got into a nursing home and they cut back on a lot of her medications, including Namenda. She had Lewy Body Dementia, didn;t even know where she was living, and certainly when she was on them a few years prior, she was showing signs of LBD even before she got prescribed Namenda. (she called me several times a week to complain 'those people' were sleeping in the back bedroom! My brother who lived 2000 miles away had an office only he could enter, through the fireplace. Her mother and father, dead for 50 years, were outside sitting on the front steps.) We all certainly want to try to hold back the tsunami, but it's coming. folks!
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I am very cynical of the meds. People want to believe and have hope, but I am a social worker, I have talked to others...most people don't see improvement, but believe it keeps the symptoms at bay. Who knows. In the end, you're there, you're the observant one...go with your gut. I would think if there is a dramatic turn for the worst, you could always go back on them.
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My understanding is that the drugs are to slow down the progression... there is no place to 'progress' in the last stages of dementia. Also, if it is reported not effective for VD, then it's good to question 'why' at all? The only thing that comes to mind, and pardon my cynicism is that the doctor(s) get a kickback... If this were my mom, I would just try to make her as comfortable as possible, and not try any heroic efforts at this point. (This is just my opinion.)
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I continually read negative comments about Aricept and Namenda. Not just on this site but others. I rarely read anything positive about it, yet it still is being prescribed. It boggles the mind. I suppose the doctors think that at least it's something. And I suppose the pharmaceutical companies market it.

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?
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We tried both Aricept and Namenda for my mom, and she experienced severe headaches and stomach upset from Aricept, as well as strange almost bi-polar mood changes, and after 3 days, called it quits. Namenda brought out a paranoia and hostility, and did nothing for her memory.
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My dad was on both meds and his behavior also increased in hostility and agitation. Since taking him off both, we actually see some of the old sense of humor my father had, (suddenly scaring me as I was cleaning him up in the morning and him saying "gotcha") I want his last days to be ones of quality and I am so glad I took him of these meds.
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My Mom took Aricept but the doc told me it was only affective for about a year. It did not have any noticeable negative affects but I did revisit it with the doc a year later and he did NOT suggest she keep taking it. She has good days and bad days now. Someday's, her memory is like 10 to 15 seconds long, other times we can go round and round with her not getting what I am saying at all (those are the scary days) and then somedays much better. I never know what I will be getting on a day to day basis so I just have to wait and see. It's a rough, horrible disease to deal with because when they are in this mid stage, you don't know when to "step in" and when not to with certain daily routines. I just keep waiting for the other shoe to drop (so to speak) where she will be completely dependent on me for EVERYTHING from dressing herself to eating and all hygeine. I am dreading it for both of us.
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While these drugs may help some - they caused major reaction for my husband so discontinued. Paraphrasing the Aricept package - "It takes up to 3 months to work - if ever - maximum benefit 6 months to 1 year - then patient basically goes back to where they were before they started medicine. Can cause adverse reactions (like us) in some patients. It does not halt the progression of the disease - MAYBE slows it down for a period of time. For those that the later is true - it is a blessing. For those of us with the extreme opposite - I would never go near the stuff.
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When I agreed with my husband's hospice nurse that Aricept helped slow the progress of his Alzheimer's for only a few months, she took him off it.
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Over 3 years ago my mother (almost 92) was put on Namenda patches by a neurologist. She tended to try to remove them, but for the most part she wore them. A few months later, when she was in the hospital for particularly stubborn UTI, I brought up her use of this product. I was asked if I had noticed a difference, and after indicating I hadn't, they suggested discontinuing it. We discontinued it and noticed no changes at all as a result. She has gotten worse, but only at a very slow rate. However, we don't know if it's vascular dementia, Alzheimer's, or a combination, as the neurologist was unable to pinpoint the cause. She has had a few TIAs in the past but no serious strokes.
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Sadly, we can't achieve wellness out of a pharmaceutical drug. To achieve wellness, we need to make lifestyle changes. Cutting down or eliminating sugar is the first step. Wellness comes through CARE: Circulation (includes massage), Assimilation (diet, breathing, good thoughts), Relaxation (sleep, rest, meditation, prayer, fun), and Exercise.
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We tried my husband on Aricept when he was in the beginning stages of dementia and it totally changed his personality from an easy-going guy to argumentative. I knew in about 2 days that this was not for him or me! Don't know about Namenda, but hesitate to try anything that isn't a "natural" supplement. I have him on a product I get in England and it seems to be working well. I give it to him at bedtime, as this is when the body does it's "repair" work. It's actually supposed to be for Parkinson's, but the dopamine seems to help the dementia as well.
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Ya just gotta love a medication that can be sold and you don't know if it works or not.
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.
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Those meds were deteriorating my mom I don't think they're good for patients
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When things are deteriorating as you say, anything is worth a try.
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The sad truth about dementia is that it always progresses. Namenda and Aricept help symptoms, like memory loss or confusion, but they are not cures. For some people, the relief of the symptoms of dementia are worth it. For others, it is not. Like the disease, each patient is a case-by-case discussion. Sometimes all it does is slow down the progression. You didn't see them help - maybe they slowed down the progression - in which case you would not see what happened later... My answer to doctors has become - what would you do if this was your parent/spouse/child? The answer may surprise you.
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