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Sad and Sorry to say my doctor told us none of the dementia medications work as they are a mask to pacify the family that the patient is getting help. There is currently no medication out that work. My doctor is very straight forward and to the point.
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CCRhea;
Please do not feel guilty about your mom's meds. And, please remember you have done nothing wrong.
My husband has had Alzheimer's for over 10 years. The first 6 years he was on several meds including Namenda. Nothing resulted from these meds. My husband's condition continued to decline. His doctor finally indicated the meds were not doing any good "only making the pharmaceutical companies wealthy." So he was taken off of all Alzheimer meds, but continued his b/p and heart meds. His doctor also mentioned it was his medical experience that perhaps the only Alzheimer patients meds would help is if taken immediately upon detection. If not, it was likened to 'chasing a horse after the gate was left opened.' Sort of like a placebo...take the meds to soothe the caregiver into thinking it would slow or cure the disease of their love one while emptying out their pocketbook. I saw absolutely no change whatsoever after these meds were discontinued. NOTHING. Perhaps it helps someone...there isn't any proof out there (as far as I know) where these drugs are beneficial. The health field readily admits there is no known cause for Alzheimer's---only speculation and theory, so how could they know what slows or improves it! Commonsense, says; they do not. I suggest that labels on bottles are read thoroughly. Disclaimers are printed for a reason that...'there is no evidence the meds prevents or slows the disease...' Duh! Hope my husband's doctor and other medical personnel I have talked to are wrong, however, for my family, it just did not happen. "Hope in a jar" for 6 years was all that was given. Perhaps that is enough for those struggling each day. Sometimes hope is all we have left, however, it does make me bitter at times when I feel those threads of human fragility and weakness are being taken advantage of.
Good luck, God bless you. God bless all caregivers.
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My Mom has taken Namenda 5 mg/daily (not Namenda XR and not the 10 mg. dose) since about 2010 when she changed doctors due to moving in with my husband and me in a different state. Before Namenda she was having some fairly violent hallucinations. Her previous Doctor put her on an anti-psychotic. It made her sleep all the time and she still had the hallucinations. 10 mg. Namenda also had disturbing results. But this small dose seems to "click" something back into place, however temporarily. If we skip a day, we will immediately see the confusion, verbal ability, and hallucinations beginning to resurface with a vengeance. Get her back on the 5 mg. daily and she's comfortable, stable, and pretty much free of symptoms other than having no short-term memory and having to search harder for the words she wants as the disease goes on. So for one person at least, this has worked for several years and is still working - not to prolong her life, but certainly to increase her comfort and ours as we live with this awful disease. (Btw, hers is likely frontotemporal or LBS, not Alzheimer's per se -- that may make a difference.)
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They stopped the meds when my mother went into hospice. Before that, they seemed to be helping to keep her calm.
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Alzheimer's medications only mask symptoms and do *NOT* slow the progression -- be aware taking any kind of psychotropic medication increases the risk of falling.
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"There is no evidence that NAMENDA XR prevents or slows the underlying disease process in patients with Alzheimer's disease."

I am - bizarrely - quoting verbatim from the advertisement on this very page for the manufacturers of Namenda.

The question is whether your mother's medications are doing her any good. Doesn't sound likely, does it? I think Jeanne's advice - to halt the drugs in turn, under medical supervision, and review the changes if any after a set period - is exactly right.
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I'm very surprised she has been taking both these drugs for so long given their side effects. With a DNR in place, it is okay to stop the meds as NOTHING you can do will help this disease. What she once was, she no longer is. The disease has taken hold and will never let go. Live with her in the moment and don't think of her as she once was, love her for who she is NOW.
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My wife is now in the very severe stage. Since being diagnosed in the severe stage, the Docs have all advised that none of the dementia meds would help her. She is in good physical health, and does take some prescribed meds for various difficult behavior related dementia symptoms. Naturally, none of the usual preventive health meds and supplements are being used. When they were last being used, she would take them out of her mouth and throw them away across the room. She is bedbound now, but lives at home, cared for by a day home health aide, and at night by me. Overall, in my opinion, she still enjoys life. Listening to music is enjoyable for her. During waking hours she sings a lot, the melodies are very good, but the lyrics are non-understandable. Not having to endure the side effects of any dementia meds seems to be a good thing for her.
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I don't believe either of those medications are prolonging her life at all.

The way to find out if they are helping any is to stop them and see what happens. Stop ONE at a time, so you can judge the effects. If there is no change, then discontinuing the drug seems appropriate. Do this with her doctor's guidance.

We stopped Aricept when my husband went on Hospice care. Amazingly, he was till getting benefit from it, so we added it back in.

Your mom doesn't like taking pills. The pills are expensive. The pills are intended for moderate ALZ. You are wise to question whether it is worth continuing them.
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There is no way to know if the meds are doing anything to make her more comfortable. It is actually documented that there is no research supporting that the meds help. It is common that after a number of years that docs will taper off some of the meds. Sometimes there is a rapid decline following, sometimes there is improvement, sometimes no change at all. At best it is a crap shoot. And the meds are quite costly. You need to evaluate your situation and make decisions which you think are in your mom's best interest, which is also a crap shoot. There is really no way to know one way or the other.
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