Follow
Share

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?

This question has been closed for answers. Ask a New Question.

30 Answers

Most
Helpful Newest
First Oldest
First
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.
Helpful Answer (2)
Report
My wife has Alzheimer's, we are getting to make final plans for her to move into assisted living...Aricept and Namenda are tricky....people ask me all the time if they are working...the answere is how could we possibly tell....where would our loved one be without them...perhaps much further in the progression of the diseases. ?....but we can't tell, so we continue....roughly two years ago my wife started having diarrhea almost daily, nobody could find anything wrong, including, finally a colonscopy which did show microscopic colitus....my research showed that a side effect of Aricept is diarrhea in uo to 40% of patients AND it may not start for a couple of years in our case it was 18 months.....stopping the Aricept combined with use of Xifaxan, a special antibiotic stoped the problem....we then restarted the Aricept and there seemed to be no change in the rate of her decline....Before she moves to Assisted Living (now just weeks away), I plan to ask her doctors about the efficacy of continuing both of these drugs....does that decision affect her long held desire for a "natural death"?...I simply don't know....
Helpful Answer (0)
Report
My wife has Alzheimer's, we are getting to make final plans for her to move into assisted living...Aricept and Namenda are tricky....people ask me all the time if they are working...the answere is how could we possibly tell....where would our loved one be without them...perhaps much further in the progression of the diseases. ?....but we can't tell, so we continue....roughly two years ago my wife started having diarrhea almost daily, nobody could find anything wrong, including, finally a colonscopy which did show microscopic colitus....my research showed that a side effect of Aricept is diarrhea in uo to 40% of patients AND it may not start for a couple of years in our case it was 18 months.....stopping the Aricept combined with use of Xifaxan, a special antibiotic stoped the problem....we then restarted the Aricept and there seemed to be no change in the rate of her decline....Before she moves to Assisted Living (now just weeks away), I plan to ask her doctors about the efficacy of continuing both of these drugs....does that decision affect her long held desire for a "natural death"?...I simply don't know....
Helpful Answer (0)
Report
Hi, this can be a tough decision on someone as to whether to stop these two "classic" medications for Dementia. The physician is likely making the recommendation to stop the two medications because mom has continued to decline past the stages that those medications are most effective. These two medications are great for "slowing down" the process in the very early stages and onset of dementia, however, are providing minimal benefits in the late stages.

Stopping these two medications can affect every patient different. Some you may not see any difference or sudden declines and others you may see that decline more pronounced. If the physician has made these recommendations and has known your mother for an extended period of time he is likely looking out for her best interest.

You may want to consider asking the physician if it is time for hospice. Hospice care is not only for those dying with cancer, they also provide excellent care to those who are slowly drifting away from dementia as well. They can provide you more support and resources.

James Registered Nurse & Owner of VitalLifeSenior
(The statements above are my opinion only based on evidence of self practice as a professional nurse and are not to be interpreted as treatment or diagnosis of a medical condition).
Helpful Answer (0)
Report
My husband's Aunt, who he has medical POA for, is 97 and had been on the Alzheimer's patch drug (sorry, I can't remember the name - ha!) for a couple of years. It was very expensive! We had never been convinced she actually had Alzheimer's, but possibly some other type of dementia - possibly from small strokes. We discussed with her doctor removing the medication, he gave us the pros and cons and eventually my husband decided to discontinue it. It's now been about 3 months and we've seen no real change, if anything she may seem slightly more alert. imho, I think some doctors routinely prescribe this drugs as a catch all.
Helpful Answer (0)
Report
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.
Helpful Answer (6)
Report
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.
Helpful Answer (4)
Report
I'm with you, 'mythyme'. I feel like we've lost control of health care and it's the elderly who are especially at its mercy because they came of age in the 'doctor knows best' era. Doctors, who now work for mammoth health care companies and who are always on guard against any possibility of liability are no longer able to just do what they think is best for their patients. And those who went through medical school more recently 'drank the Kool Aid' when it comes to patient care – "if you can diagnose it, medicate it."
Helpful Answer (1)
Report
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?
Helpful Answer (2)
Report
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
Helpful Answer (4)
Report
my mom was only on it about a year but got a bleeding ulcer, so the doctor told us to quit it.
Helpful Answer (0)
Report
just finished a hospital stay for my husband with ALZ , information I found out over the 11 day stay the meds in question work at best up to 1 & 1/2 years. because they are expensive, Drs continue to prescribe them for years, big Pharms & Drs got to make $$$$!
Helpful Answer (0)
Report
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.
Helpful Answer (5)
Report
Excellent awakening, bravo
Helpful Answer (1)
Report
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.
Helpful Answer (5)
Report
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.
Helpful Answer (2)
Report
Thanks for the update, Deardau. My mom is on both of these drugs, and I asked her doctor last year about stopping them. He felt that since she tolerated them well, it wasn't worth the risk of possible accelerated decline to stop them. I am still a little skeptical about their effectiveness, and the price of the Namenda causes her to fall into the Medicare Part D "doughnut hole" by the end of the year. Sure with I had a functional crystal ball!
Helpful Answer (0)
Report
I know there's a time limit on both of those drugs and their effectiveness. At one point my mother-in-law's doctor said she might as well get off Namenda since it was no longer (supposedly) working. When I told the nurse at her asst. living place what the doctor said, she suggested we don't stop. She said that once you stop there's no going back from that. She told us that once a person stopped those drugs, whatever (if any) good they had done, will stop. So we kept them up just in case they actually do any good. What's it hurt?
Helpful Answer (0)
Report
Both these drugs will not change the outcome, and in fact only add side effects. I took my husband off both and he is still living at 87. Do as the doctor suggests. There is no danger in stopping those drugs gradually.
Helpful Answer (1)
Report
Ferris- My point was that for my mom it's possible that stopping the drugs increased her agitation. I'm sure that we can't judge all dementia patients by what my mom or your husband has gone through. Some people do not have adverse reactions to the drugs; in fact, the benefits outweigh the negatives for many. It's an illness of the brain. Who knows what parts of the brain are affected in individuals? Each patient has a different journey.
Helpful Answer (0)
Report
Point well made Deardau. I still do not think Aricept is for agitation. I actually took this drug at 2 1/2 mg (halved the 5 mg.) and it made me a hypomanic, but I did some creative Christmas decorating....
Helpful Answer (0)
Report
A reminder: ultimately, the goal of these medications is to line the pockets of their creators and manufacturers. Profits are priority and alterations to pharmacological protocols by your physician might well be due to political/profit-based factors rather than a patient's best interest.

Case in point:
geripal/2014/02/why-is-forest-laboratories-is.html

We are cogs in a profit-focused machine. Our smartest move is to recalibrate our bodies through healthful eating and regular exercise (weight-bearing and HIIT). Unfortunately, our loved ones are likely too far down the path to reverse or halt their progression; however, we can protect ourselves and future generations. Recognize that our bodies are complex chemical systems. EVERYthing you add (every food, every supplement, every medication) alters that chemical composition. Each additional medication you take alters that "stew". Medications list potential side effects and interactions between two medications; however, most Parkinson's, Alzheimer's and dementia patients are typically prescribed a laundry list of meds. At that point, it's virtually impossible to predict the potential effects of the drug cocktails other than through trial and error. Every patient becomes a lab rat.

My family and I are getting quite an education. Sadly, the cost of that education is the life of our loved one, spiraling downward.

If we knew earlier what we know now, we would have:
1) bolstered his gut health;
2) altered his diet to exclude sugar, ALL processed and convenience foods, GMOs, non-organics and unhealthy fats & oils;
3) introduced an intentional fitness program;
4) committed to a consistent 8-hour sleep period;
5) done extensive genetic testing to determine HIS specific predispositions, anomalies, deficiencies, etc., which would allow us to customize his wellness program (versus a drug protocol...drugs override our innate systems, rather than encouraging our bodies to function properly. When we rely on drugs, we dramatically alter our bodies' complex interplay, typically throwing our systems out of whack. I can definitively note that the majority of health issues with which I grapple are DIRECTLY related to long-term damage from medications.)

I'm not militantly anti-medication. I AM an advocate for correcting my system to the greatest degree possible before considering the introduction of medication (this includes hormones, such as birth control, which impacts thyroid and pineal, too--hormones work together; changing one changes all.) Meds do have a role at times for some of the population.

Much of what we attribute to "aging" is, I suspect, actually disease and side effects from a manufactured diet and pharmacological impacts.

My heart goes out to you all through this heartbreaking process. I urge you to take good care of yourselves along the way. The quality of your own future depends on it. A firm foundation trumps patching up after damage has taken root.
Helpful Answer (1)
Report
I agree that these drugs are overprescribed especially to people who are too far gone and for years longer than indicated. Back in the day doctors overprescribed antibiotics. Now we're seeing the consequences of that e.g. drug-resistant super bugs like MRSA. One would think that doctors would think more about the long term.
Helpful Answer (1)
Report
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.
Helpful Answer (5)
Report
Mom was on Aricept over 10 years ago and ended up with ulcers. I didn't know the drug had anything to do with it. When I put her back on it, she almost died from bleeding ulcer. The doctor then told me, that they are a side effect on some people. I felt so bad at giving her that.
Helpful Answer (1)
Report
My grandmother is 88 years old, and has had dementia for the last 5 years. She lives with my family and myself, and we have been battling loose stools with her for several months. With all the questions and concerns I have expressed about it, not ONE doctor or in home health care nurse has mentioned the fact that aricept or namenda may be the culprit. She has been on both for several years, and I feel at this point they must be doing more harm than good. So, so thankful that I found this thread. Thank you all for sharing your helpful advice/experiences.
Helpful Answer (0)
Report
My aunt takes this medication but also has to take Miralax daily. Otherwise she gets constipated. She also takes probiotics daily.
I think it depends on the person.
Helpful Answer (0)
Report
My Dad had demention starting about 6 years ago. It was a steady decline UNTIL we were prescribed Arisept. That helped alot and he could talk and communicate with us much better. As he started to decline again, he was prescribed Nameda, and he improved.

it is worth every litle bit of the quality of life he retained for the benefits of these drugs. I know that the pharmaceutical companies make a profit, but they also help in so many cases .. I don't think they would be profitable if they did not. I hope they use those profits to find more ways to treat even more illnesses.

I say to treat the symptoms if there is improvement. He is now 96 and I do not want to risk stopping the medication because online research shows he may then decline and there is nothing else we can do about it. To hear him say "I love you" one more time and actually know who I am is a blessing. I know he will not be with us much longer so want him to enjoy every moment he can.
Helpful Answer (0)
Report
On the other hand, they tried the patch early on in his disease, and he got worse.. we removed it, he went back to the way he was before the patch was prescribed. That is when they tried Arisept. I'm sure this isn't the same with everyone, but it was worth it to try.
Helpful Answer (0)
Report
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.
Helpful Answer (3)
Report
This question has been closed for answers. Ask a New Question.

Recent Questions


Popular Questions


Related Questions

Ask a Question
Subscribe to
Our Newsletter