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My mom's Dr. has suggested stopping the drugs prescribed for Alzheimer's. Mom has been on the drugs for about 8 years. She is in the later stages of Alzheimer's but can still communicate and she still knows me. I naturally have some concerns about it. He has promised to ease her off the meds and to monitor her for changes. What experiences have you had with this?

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I think doctors often prescribe 'dementia drugs' in order to "do something" – the expectation of most Americans when they visit their doctor. Personally, I think their efficacy is pretty limited and, in my own family member, I don't see any difference at all. I've asked friends whose parents take them, too. Again, no perceivable impact. I think the main improvement these drugs cause is to the drug companies' bottom line : )
There is no cure for dementia and loading someone up with drugs and subjecting them to the side effects doesn't improve their quality of life.
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Research on these drugs generally says they help (mask symptoms - NOT delay progression) only about 20% of those taking them, and for a maximum duration of 18 months. Sorry folks, but my research and experience has resulted in the belief that pharmaceutical companys are raking in billions on these drugs by exploiting the intense fear about the inevitable decline with dementia, and the fear of it accelerating if we stop, even though all clinical trials show a very limited duration of benefit even for the few that do experience improvement. Fearing accelerated decline upon discontinuing these drugs after years of use has no clinical basis whatsoever. Physicians too feel helpless, and their paradigm is so dependent on pharmaceuticals that they go along with the deception, as is the case with the many drugs prescribed that often cause more harm than good.
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My husband had a severe reaction to both Aricept and Namenda, and therefore I will not allow any more drugs to be prescribed for dementia since they do not do anything to halt this disorder and only have terrible side effects (at least in my husband's case). As a nurse, if your doctor wants to take her off these drugs, at late stage dementia it is unnecessary for her health to stay on them. They are constipating as well. Best thing is to not worry about taking her off because she really will be better without them. Best wishes.
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I am going through this. My mom is 87 and on both. She has such bad, loose, stools and I am constantly doing laundry and washing carpets. I finally got her to put on a diaper (hate that term) and she is not happy. I showed her the underwear and pants I need to wash - two sets in one day - and she realized it was a problem. My question is: what can I do to stop the loose bowels? Natural remedy like foods to eat to stop her up? She is settling in with us (only been here three weeks) and she is relaxing and much happier. Two good days in a row. So I would love a reply if anyone has any ideas. Thanking you in advance.
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When my husband started dementia he was put on aricept which gave him diarrhea. Then he was put on namenda. A few months later I asked if he could go off it because of the ridiculous cost. The doctor told me my husband would regress and shouldnt stop it. We are all at the mercy of the medical profession and I often wonder how much they actually know.
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We went through the decision to stop namenda, we could see a steady decline and felt we were throwing money away, paying for it, up to $2000 a year out of pocket. Our neurologist, did say they are noticing no real benefit in the later stages of alzhiemers, of course no one knows and everyone is different. At first, she seemed more confused, concerned us, until she cycled back into her good days, so blaming on the medicine was not feasible.
Also I look at it, why keep someone status quo on it and they have no functionality or joy in life, it was not worth it and we do not see any changes, or problems
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My father's doctor (he has been diagnosed with LBD) switched my father from Aricept and Namenda to a Rivastigmine patch. After about four months, his cognition is much improved and my mother has been able to cut back on the Risperidone which puts him to sleep if he becomes too hostile and aggressive over his paranoid delusions.
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We went through this process earlier this year. My question was Why? What is the doctors reasoning for doing it? Are the side effects worse than the benefits? I also spoke with our neurologist (he was the actual prescriber for us).

In our case my MIL has LBD (Lewy Body Dementia) and the doctor felt the side effects were worse than the benefits. I have been very lucky in finding a doctor that is willing to explain and talk me through things. We did taper her off the drugs and I saw a positive difference.

BUT everyone is different. Medications effects people differently. One of the biggest things I learned is to make sure you understand why they are changing her care and what to expect. My neurologist warned me that taking her off these drugs might cause a downward reaction and once "lost" we could not regain that starting the medication. Again everyone is different and I was dealing with LBD. Question your doctor until your comfortable. Seek a 2nd opinion if possible.

Good luck.
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My mom is also on both of these drugs. She started Namenda about 6 years ago, and added Aricept about a year later. I read that these drugs are generally useful for only three or four years, so last year I asked mom's PCP (who is not the doctor who started her on these drugs) if we should discontinue them. He said that the research is inconclusive as to how much they help and for how long, so since mom tolerates them well, he felt that they should be continued. I have mixed feelings about this, but I would hate to discontinue them and then have her decline rapidly. I doubt if research will ever be able to provide a definitive answer because dementia varies so much in its symptoms and progression. I have decided that she will continue to take them until she can no longer tolerate them or until her dementia progresses to the point where she cannot function well enough to have a reasonable quality of life. The goal of these drugs is slow the progression and allow the patient to retain function and memory, and if there is nothing left to retain, what is the point?
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Okay, it has been 4 months since I asked the question about stopping the ALZ drugs Aricept and Namenda. Mom did go off both meds in October. She has had a history in her dementia of agitation, especially around personal care. She's in a nursing home. Her agitation increased through the first month off the drugs. She developed a respiratory illness the next month that knocked her for a loop. Since then she has become, first severely agitated and violent, then she stopped eating, then she has just taken to her bed. Of course it could be the natural progression of her illness. About a month ago, the Dr. put her back on Aricept because he said that stopping that drug sometimes increases agitation for some. It's impossible to know what the trigger was for Mom's aggressive behavior, or if it would have happened anyway, but it's something for others to consider in a similar situation. Mom already had some agitation around personal care issues, but it all escalated after the Aricept was stopped. She's back on it now, but hospice has been called. She can no longer eat and she has lost a lot in the last 2 months. We'll never know the real reason for her decline. They say if you've met one person with Alzheimer's, you've met one person with Alzheimer's.
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