Is it OK to stop Alzheimer's meds?

28 answers | Last updated: Nov 08, 2016
A fellow caregiver asked...

My Mother-In-Law is in the middle stages of Alzheimer's and is miserable. The amount of anti-depressants she is on is ridiculous and it's surprising she is not a walking zombie. They do have her taking Namenda and Aricept. Most of the reason she is miserable is because she is aware what is happening too her. I'm wondering if it is reasonable to ask the doctor to stop the Alzheimer medications? Why slow down the inevitable if she is already miserable now?


Expert Answers

Joanne Koenig Coste is a nationally recognized expert on Alzheimer's care and an outspoken advocate for patient and family care. She is the author of Learning to Speak Alzheimer's. Also, she currently is in private practice as an Alzheimer's family therapist. Ms. Koenig Coste also serves as President of Alzheimer Consulting Associates, implementing state-of-the-art Alzheimer care throughout the United States.

Stopping Alzheimer medications is not as logical as it may sound. Often when the meds are withdrawn the disease process actually appears to speed up. Most clinicians and professional AD carepartners opt to keep the Alzheimer person on such medications as Aricept and Namenda until the last stage of the disease where the person requires total care. The positive effects may not be measurable but there seem to be definite negative manifestations when the meds are withdrawn. The AD person may become less active, more confused, less able to participate in activities of daily living and show increased verbal difficulties. It is a decision that you and your family must make with input from the medical community. And to complicate this decision, you may not see the positive effects of these medications until they are removed. When a question involves starting or stopping Alzheimer medications, I frequently suggest contacting your pharmacist - an overlooked goldmine of information on our carepartnering journey.


Community Answers

Red hill rebel answered...

My MIL is on Aricept and Namenda. Her daughter is over administering her meds. She does not come and have her take the morning dose and this causes a lag in her getting the full daily dosing. She comes at night and gives her her medicine but there are nights that she refuses to take the meds. Also, the Namenda is to be given 2 times a day and she is only getting one dose a day. I have wondered if this sporatic medication dosing could be what is making my MIL's symptoms seem to accelerate? These medication work on the brain and in a mind that is already damaged by dementia, could this make matters worse for her?


The caregiver's voice answered...

This is a difficult situation to be in.

As our loved ones' cognitive abilities decline (such as those living with Alzheimer's) and cross through this aware-of-my-own-limitations stage, if we keep them on medication that holds them at this level, they will grow increasing (and understandably) depressed.

If we remove medications (only do with doctor's supervision as there are withdrawal risks and other risks that go along with removing some medications such as antidepressants) our loved ones will decline moreso and there is no medication yet that will help them to regain lost ground.

As a former caregiver, I would suggest temporarily removing meds (with doctor's supervision) and allowing your MIL to cross through this painfully depressing state and then return her on meds to keep her functioning. Nothing is more life-saving to a caregiver to have a loved one who can still accomplish some of the activities of daily living (ADLs).


Mary lita answered...

I am not going to stop the meds. Thanks for all of your input, I find that it is best to keep them up since she is doing so well.


A fellow caregiver answered...

We stopped mother's aricept and namenda and saw immediate improvement that lasted about three months. The Consumer Report research found that aricept only helped 1 percent of alzheimers patients. And did nothing for vascular dementia. I have found this true with my mother. i feel they are a waste of money. Money I spent on help at home. Mom is ten years in and we have decided to go with hospice care because she begs to die almost daily despite loving care by her family.


Paulagame answered...

I recently did some research on this issue and then talked to Mom's psychiatrist, who handles all that type of medication. I found info that taking her off Aricept and Namenda would result in an abrupt decline that could not be recovered by starting her back on those meds. I often think it is a waste of her money, but I don't want to take a chance on further and sudden decline.

I find anonymous' post very interesting. I didn't know these statistics. I don't think Mom has AD, mainly because she has had substantial memory issues for over 15 years and has progressed very slowly through the stages of AD. About 5 years ago, a neurologist took scans that showed several "dead" areas in her brain; he said the cause of her memory loss was TIA's/ministrokes. My recent readings state that TIA's don't leave lasting debilitation because they are transient; I have trouble with reconciling that with the neurologist diagnosis.

I don't think many people try taking their loved ones off the meds because they really don't really know what to expect and don't want to do anything to make the matter worse. Leaving them on the meds is the more conservator choice.

I wonder if the standard advice will change when Aricept goes generic in November.


A fellow caregiver answered...

My mother is in year 7 of her AD diagnosis and in the early part of the late stage. I spoke with her MD and we agreed after reading the stats to take my mother off all AD meds. It is really hard to know when a medication is working or not working for an AD client because everyone progresses with the disease at different rates. I did not see any significant decline when removing my mother from the meds. She has periods (on or off the meds) where she has episodes of extreme confusion, gets really bad, then regains some previous cognitive abilities and levels off at a "new norm." I just have to adjust to the "new norm." It is difficult living through a loved one with AD, but we take what life gives us and thankful for the gifts when there is awareness momentarily and see the person they use to be for that brief instant.


A fellow caregiver answered...

My mother is on razedyne (spelling?) as she is in moderate dementia due to mini strokes. I will says this - please pay attention to her medications especially if you are not the one giving them. My mother is in an assisted living place and the new pharmacy they hired to over see everyone's medications decided to help cut cost and sent a form to her doctor (now a former dr.) to change her to aricept which is for mild dementia. YOU CANNOT GO BACKWARDS ON THIS MEDICATION. I didnt know this til I started seeing a decline in her and made an appt. with a different dr and started to gather her list of meds. I immediately got on the phone and let a few people have it..... informing them since I had Healthcare POA that I should have been consulted prior to any changes not just what the dr. said. Doctors do not know everything.
Keep in mind some people cannot take Namenda - my mother couldnt. My mother is not on any anti-depressants... at times I dont think that is necessary. Its just another way to drug someone up not to feel anything. All this dementia stuff started back in 2001 with my mom... physically she is fine and walks every day in the area provided by the facility and is very happy. She has her moments with the memory problems but otherwise is in good health. She may outlive me. Just wanted to let you know that taking someone off their meds for dementia/alz is not a good idea. anti-depressants ? thats another story.


Gerrie answered...

My Mom is better off aricept and namenda, they cause her to be much more agitated and have hallucinations. She still has delusions off the meds but not full blown hallucinations. She was on them for years and it was by accident that I discovered that the medications were actually making her worse. She is in the mid-late stage. Medications affect everyone differently and the list of side effects for these meds is a long one.


A fellow caregiver answered...

2 yrs ago, my father was asked by a doctor to remember 3 things and later when the doctor questioned dad, he could not remember them. Humiliating! Later that afternoon, my father (97 at the time), looked at me and asked "am I a lost cause". Broke my heart and I immediately said to him "absolutely not", we all have memory problems, even tho we knew he was getting worse. The doctor put him on a patch at that time to slow the alz, and for several weeks all he did was spit up or vomit. My father was only on 1 other medication at the time (amazing, the man never even gets headaches), so we knew it was the patch. I called the doctor telling him I was taking dad off of the "patch", it was not worth it to see him sick all the time. My father is now 99+ and yes he has progressed and does not remember alot of family, but he does know my husband and me as we were his and moms caregivers for 7 1/2 years and (he still tells everyone I am his daughter, amazing again), and I love him so much. I'm not sorry I took him off the medication, he stopped the spitting up and vomiting, and it was not going to stop the alzheimers. If your loved ones are doing fine on the meds, by all means, don't stop them. My father's case was different as are each and every case. We need to find a cure for this devastating disease, soon!


Barbp answered...

For 2 weeks by error we didnt have the Excelon patch. I did notice a difference in that he was not as well as when on the patch.


Hangingin answered...

My Spouse requires total care and is non verbal. The only things she can still do is put her spoon in her mouth if you have placed some food on it. She can also walk if you can get her up and assist her to bathroom. The only memory drug she is still on is Namenda and I'm not sure it helps. She seems to enjoy music and will watch old movies. She seems to recognize me and one of our children. Her physical health is quite good. Her appetite is good considering the fact that I prepare the food. Over the last 2 years or so she has lost about 20 pounds but that is good according to her height. At this time I plan to continue the Namenda but will consult with her Neurologist on her next visit


A fellow caregiver answered...

My mom has done much better without the medications. Way to many side effects.Not worth the risk as then it is another issue that sometimes can not be reversed. I have seen it. Less is better if possible.It is just a temporary fix if it works at all anyway.


A fellow caregiver answered...

I am glad I found that someone had already asked the question. My 70 y/o MIL is Mod AD (lives with us) and perhaps in the early stage the meds were helpful, but we are not convinced either that prolonging the inevitable is the 'logical' course and are having the same debate about it ourselves. Seems to me it suits the pharmaceutical companies just fine, but not necessarily the clients. No doubt, it's gotta be a gold mine for them even though the patient will not be cured by it. The other issue is it seems over time these medications can have a negative affect on the liver. One liver test MIL had done recently came back elevated, so the doc said he'd do another test in a month and if it came back the same way, he would "take her off the meds temporarily". I don't see the point of the Russian roulette game.


A fellow caregiver answered...

After nine years with Alzheimer's, my mother has lost her battle. By the end, there was very little recognition, inability to form speech, and difficulty eating. I had stopped the Alzheimer's meds 2 years ago because she was already heading in this direction and I couldn't see prolonging the inevitable and making it more difficult on her as her memory and ability to care for herself declined. Her PCP and I discussed this at length before I stopped meds. I did not see any rapid decline after stopping the medications. The rapid decline came this last year as she became unable to consistently feed herself. She was incontinent, withdrawn, and losing weight. She had a peaceful passing. I encourage everyone to talk to their loved one before AD gets too far advanced and know their wishes. Get the living will made, health care proxy. It made my decisions no less difficult to make, but I had guidelines to follow on her wishes.


A fellow caregiver answered...

My dad is 67 and in late mid-stage to early late-stage AD. He was taking both Aricept and Namenda along with Zoloft and was a zombie. On many occassions he talked about killing himself because he no longer had a purpose in life. He stayed confused and frustrated and slept most of the day. Recently, he refused to take his medicines. He has now been off them for 3 weeks and feels much better. He communicates better and looks great and has even been spending some time outdoors. His memory also seems better. He can recall each of our names along with our spouses which he hasnt been able to do for some time. He enjoys telling stories from his childhood and listening to music. I had very mixed feelings when I learned that he wasnt taking his medication but after spending a great deal of time with him recently, I can see the drastic change my mom told me about. We realize the medications were to slow the progression of AD but I think, and feel that he would agree, that quality of life is better than quantity of life.


Ca-claire answered...

Mary Lita - If I were in your position, I would stop the anti-depressants, rather than the dementia meds. Check with the Pharmacist, as they truly are a goldmine of information about medications - that's their speciality. Some anti-depressants specifically state not to use on people diagnosed with dementia. Actually, I was in your position not all that long ago. That's how I found out about the contra-indication of the anti-depressants. I have always used Pharmacists to make sure that all medication makes sense with any diagnosis, even my own diagnoses. There are some states considering having Physicians just provided diagnoses to Pharmacists, and the Pharmacists determining how best to medicate - this really makes sense to me. Best wishes on your caregiving journey.


Humanity hiker answered...

My wife is in an advanced stage of early onset Alzheimer's. However, we have been extremely active throughout our life, she has hiked over 12,000 miles on long distance trails. Quality of life is important. She had developed some pain in her legs and, after a report about donepezil side effects, I stopped that medication. A few days later, though oblivious to her medications and most things, out of the blue she declared her legs were feeling better. About a week later we went on a ten mile hike, not possible a week earlier. Needless to say, I've kept her off donepezil since then.


A fellow caregiver answered...

The person we have legal custody of we were told 21 months ago that they would not make it for 6 months. We moved the person into an Alzheimer unit and removed some of the medications. The person was able to live there for 9 months prior to breaking a hip and requiring surgery. After the surgery we were told the person would make it 2 weeks at the most. We are now in the 14th month since surgery and are requiring the nursing home facility to reduce the drugs more. The person does not remember how to walk and physical therapy has had to stop therapy. As the person is digressing we are learning things about the young life this person had that no one knew about. The person has taken on the roll of being their mother now and we see the little child through the mother's eyes. We are reducing the drugs because otherwise at this stage our person just sits and drools, slurs words and cannot say the word they actually mean. We feel that our friend has dignity as they approach their life end.


Richard864 answered...

My brother was on Aricept for a year. I dislike pharmaceuticals in general because there are always side effects, not infrequently worse than the symptoms being addressed. Because most in the medical profession go with accepted protocols, it takes courage to make a decision that does not accord with what I would term a bias in favor of medicating.

In my brother's case, there was no difference after Aricept was discontinued.


Dubbydoo answered...

My Mother was on Aricept for a year and when she was taken off of it she became disheartened and lethargic. She was unable to walk or move properly. She was then put on the patch Excelon and after 1 day she was hallucinating, and had no idea where she lived. It was a horrible experience. I do not suggest taking anyone off of Aricept and definitely do not recommend that patch. It has caused our family so much stress not to mention our poor mother.


Csr answered...

I am so grateful I found this site.This year we were in the drug coverage gap from April until November. Thank Heavens the plan D company covered at least part of the cost. My spouse is in the late moderate stage. I have been trying to decide if the medications are still doing any good. He has been on Aricept since 2011 and Namenda since 2012 but he continues to slowly lose ground, especially this year. We had tried Vitamin D in large doses, vitamin B complex, and axona which we eliminated. I also recently eliminated multivitamins to simplify the pill regimen. I will probably continue the meds for now but this gives me the courage to end them when I feel suitable.


Saddness answered...

My husband is on memantine and exilon pills. He has copious amounts of phlegm and is now becoming angry and refusing to take meds. He does have difficultly swallowing exilian as a larger pill. He is 83. I do not see the pills are helping as he is declining monthly. I am going to take him off both pills and see what happens.


A fellow caregiver answered...

My mom has vascular dementia for 16 years now. She has been on named for 15 years and on aricept for the past 6 months. I took her off the aricept 3 months ago and have seen NO decline. About 2 weeks ago I decreased the named from 2 pills a day to one pill a day. The only thing I have noticed in the past week is that se=he sleeps less and will talk a lot during the night. She remembers things off and on and since I have been giving her a product called Neuro 1 by nutrition 53, I have seen her more focused and awake during the day. She interacts with us way more on a daily basis! She has been on this supplement for the past 5 months.


Pugeeta answered...

my father was originally diagnosed with AD, but recently new doctor diagnosed frontal temporal lobe dementia. doctor said Aricept can make this condition worse.. advised tapering.....now, dad is taken significant turn for the worse. I am now wondering if Aricept may have been helping and now he is getting worse without drug at full dose. terrible not knowing what to do.


Sharrylynn answered...

I am trying to make this decision as well. My mom was in a nursing home for 3 years and they had her on Effexor for depression as well as Aricept and Namenda. She has been living with me for a month and her new Dr. suggested taking her off all of it because she was sleeping so much and very lethargic. She started by reducing the Effexor from 225 mg to 150 mg and it has been a living nightmare. She has gotten even worse but after doing some research on Effexor, I think she is having discontinuance syndrome from coming down too quickly. Has anyone else experienced this with their LO?


Moomii answered...

My mother is 79 and has vascular dementia and maybe alzheimers. She started out 3 years ago on aricept and nemenda. 1 year later she was taken off aricept due to heart issues it caused. We recently, with doctor, took her off nemenda. Doctor said to stop cold turkey even when I questioned it because i remembered starting it was a gradual titration. I usually do my own research but I just did what I was told. NEVER stop cold turkey. She started talking nonsense, was tired, ended up in the ER twice because we thought she was having a stroke. She has been through a lot so a stroke was not out of the question and I did not think about relating it to the nemenda. It was not a stroke so I started questioning nemenda. It has taken too long to get her started again - she has been off for 5 months, but doctor did not think she had declined. I insisted so we are starting and got prescription.. I again was not told to gradually increase but I know better so we are starting with 5mg per day (not 20mg) It has been two days and she is more sleepy and more angry. she seems to have more sundowners now. I don't know if starting the nemenda back up is a problem since she did well on it before. I am going to keep going with the titration and see how she does. My suggestion to others is do not stop the medication simply to cut down on number of pills. We did not notice a problem on it and should not have stopped. If you do stop nemenda - make sure to do it gradually. This is a journey of learning and unfortunately mistakes do cause problems.


My mothers mother answered...

My mother has been on Namenda only, for five years. As she has recently entered the beginning of the late stage of ALZ, she was getting combative and agitated when anyone tried to help her with anything. It was suggested to stop the Namenda to see if this would help with the agitation. It seems to have helped tremendously. She is now sweet and pleasant once again. It was suggested to me that because of the way the Namenda works, in the later stages, it can cause agitation. It was stopped cold turkey and there were no unpleasant effects, only good. There are no easy answers with this disease and no one size fits all. Sometimes you just have to go with your gut.