Our Mom is in the middle stages of Alzheimer's, and she was on Aricept for about 2 weeks. She was so ill, that we took her off of it. She lives alone, and the side effects of this drug were so awful (vomiting, increased confusion, dizziness and headaches) that we worried about her even more. Maybe she was just more sensitive than other people, but it just wasn't worth it. Besides, there's no guarantee that the symptoms would abate...there was no sign that there we lessening with our Mom, and she was completely miserable. Now she's happier, side effects gone. The decision to take her off Aricept may not have been the best decision, but her quality of life (however much more time she has), is of utmost importance to us.

My mother is in the middle stages of alzheimers. She tried Aricept but it made her extremely nauseous so we stopped it after 2 weeks.

However later she started having more episodes of being nervous - so the Dr. tried her on Namenda which has been very effective on calming her, with no apparent side effects.

Like your situation, my Dad is now showing Stage 7 signs (some difficulty swallowing solids). He's on Namenda and Aricept as well (didn't tolerate Exelon at all, vomiting etc.). I have read that in later stages AD Namenda and Aricept are no longer effective in delaying the effects of the disease - so taking them much longer seems pointless.As long as he recognizes us, and can function well in terms of eating, bathing, dressing and socialing, we will continue them, and stop when the situation turns.However, I can tell you I shudder to think how much faster he would have progressed without them. He's had nine high functioning years since diagnosis, which he might not have had without them. I have no idea how families without means handle the cost - at least he has a decent enough pension to get by.

But our family has an additional wrinkle: he also takes a dozen or so medications for heart, high blood pressure and so on. My brother and I (along with his cardiologist, whose mother also died of AD) also feel that force feeding pills for heart disease to ward off a heart attack or related is also pointless, given his stage of AD. None of the pills can cure his cardio issues. All they do is allow him to live long enough to ultimately die of AD. He has signed advanced directives, and under that auspice, we are considering weaning him in the next few months from his cardiac meds as well. We would rather he pass relatively quickly -and naturally - from cardio failure, than struggle (with us) through end stage AD. He always said he'd rather die with a hammer in his hand than be hooked up with tubes, so we are taking his philosophy to heart.

Has anyone else faced this dilemma of two competing and ultimately terminal diseases?

I agree that the drugs are effective in the early stages of AD, but are much less so in the later stages. My mother was taking both Aricept and Namenda. She tolerated them well and her dementia spanned about a 5 year period. She was able to live at home (with help) until she died suddenly of a stroke at home. Right before she died I was considering discontinuing the medications because her quality of life was diminishing rapidly. She would have been mortified had she been able to realize the degree of her confusion and dependence on others. It was a true blessing and my hope that my mother would die suddenly and at home, because I had seen first hand that being hospitalized is very confusing for patient's with dementia and most of them experience extreme anxiety and disorientation. I feel the drugs are good in the beginning of the disease, but once the quality of life goes down they do little good, except to prolong the sad journey. I feel that to remove excessive medications, including those for heart disease can be a blessing because a sudden death is so much kinder for elderly people. My mother died in her own kitchen over a 10 to 15 minute period after collaping and becoming unconscious. It was traumatic at the time, especially for my father, who was at her side. However, when I arrived at the scene 10 or 15 minutes later and found her sitting peacefully and lifeless in her own chair at the table, I knew she had died in a way she would have chosen for herself and with dignity. I cannot begin to describe the aura of peace that surrounded her. It is important to remember that doctors are forced to practice "defensive medicine" to avoid lawsuits. They usually offer all options and often patients are taking medicines or undergoing "state-of-the-art" treatments that really aren't helping. I say this without bitterness because I am a doctor. It becomes the family's responsibility to access the effectiveness and practicality of treatment. If your loved one makes his/her wishes known before losing the capacity to care for himself/herself, it is much easier to allow nature to take its course without feeling guilty. It is always a hard choice. I would urge anyone who has a parent with early stage dementia to discuss their end of life wishes. If you know that your parent does not want to be hooked to life support , given IV nutrition or fluids, or take life-prolonging medication when there is no hope for cure it is much easier to carry out their wishes without feeling the guilt of making life and death decisions for another person.

I agree that these medicines are not helpful in the late stages. The owner of the last facility where my mother resided, before coming to my home, always said she had never seen them help anyone in her 20 years of offering the service. I think you have to be very careful about discontinuing these meds...they start off introducing them slowly into the patients system so stopping abruptly could present problems. You should check with her doctor before taking action. In my mothers case the assisted living facility that she was in failed to provide the proper dosage (I monitored the Rx refills on my mothers medicines and could tell from the frequency of the refill and the amount left in the bottle after a 30 day period). So I knew that she was getting less over a period of time so the prescribed frequency was easy to reduce after that. However, I did notice some increased agitation, but could not tie it to her reduced intake of Namenda. These meds are expensive and I think they are not helpful for memory issues. Bless you in your effort, I know how hard this is.

My Dad was on both Aricept and Namenda for 2-3 years; the Aricept was just stopped and he's still getting Namenda. I think they helped the disease slow down, but how does anyone really know?? His Aricept was stopped once by his primary care doc, who didn't think he needed it. He immediately had lots more confusion, so we restarted it. Now he's advanced in the disease, and the nursing home staff are worried about his declining appetite, which is why they stopped it this time. They started him on Risperdal instead. He is doing OK.

I don't really understand why he's still on Namenda.

I HATE THIS AWFUL DISEASE!!!!!

Don't know if this is an answer exactly but -- please share the following article: http://www.huffingtonpost.com/2009/06/12/eli-lillys-zyprexa-fraud_n_214907.html, or google: eli lillys zyprexa fraud. This past week, news stories from several sources have come forth that Eli Lilly and 2 other leading drug companies have been caught lying about the qualities attributed to zyprexa and other drugs. The drugs are not what the drug companies said they were and even though research labs denied what the drug companies said, these major pharmaceuticals were still allowed to market their drugs erroneously. Lilly and Pfizer have both been fined, but not forced to stop marketing these drugs. It's not just Alzheimer's drugs I know, but if people do not know what's going on, drug companies will continue to sell expensive, ineffective and even dangerous drugs. Before you allow your loved ones to take drugs, google or research them first.

It is facinating that there are so many different answers to a question. We are also saying "doctor said" which makes me ask what credentials they hold. Are they neurologists or specialists? My husband has been on aricept and then namenda for about 6 years. He is in his 9th year of Alzheimer's and Lewybody dementia. He is now in hospice care. I feel that we have had all of these great years because of these two medicines which were started early. I also have asked his neurologist if they should be discontinued and her answer was, No, because we can't be sure what help they are still giving at this point. He is also on medicine for heart conditions. Last week he had a minor stroke and is beginning his transition. He is at peace, comfortable, and very content. He can still move, talk, ssit in a wheelchair, and go to the dining room to eat some. We can still talk and he understands me and indicates that with his eye movements. Do I discontinue any meds when the man is so comfortable and content? I am glad that I have more than one doctor and hospice to give me guidance.

My mother has been on Namenda for about 3 years and it was prescribed to diminish the hallucinations due to her Dementia, which is still currently mild to mid. This med has helped with the hallucinations significantly over other meds, including Aricept, which gave her nausea. We tried several other meds before settling on Namenda, and this has been the best so far, no side effects, and I'm grateful for it now, though I know the disease will continue to deteriorate. Alzheimer's/Dementia is so prevalent now it makes me wonder if in times past there was so much of this disease-are we a now product of of our culture and environment? We try to band-aid this disease with all sorts of costly pills and meds, but are there efforts to try to find the root of all of this- for our generation? I realize we have to deal with the current problem now, but I hope for the future of our kids who will caregive us, that there are efforts being made now to get to the bottom of it!

Terrysmith700: And how does shoving medications into an individual to "preserve life" also not play into the God-syndrome? If one were true to the "let it be" or "god's will" mentality, one would withhold all medications and let nature take it's course. I cannot for the life of me, understand the rationale of pre-lifers who would condemn both patient and family to the anguish of a prolonged and grisly death thru end stage AD, when simply weaning an AD patient with chronic and severe cardiac issues of their meds would simply allow nature to determine whether heart or neuro ends life. If anything screams "I will keep you alive whether you want it or not", shoving meds that offer no cure into a terminal patient, that is it. The medicator is in control, not nature, not a Divine authority. Please, stop the "suffering is part of dying" nonsense and associated guilt trips and let families and their physicians who know the patient determine a course of final treatment, such as it may be.

Hi You are so right that it makes a difference the credentials of the doctor. In my mother's case, she would only see an internist who just kept throwing any drug at her without even assessing where she was. NOW she is seeing a neurologist who specializes in alzhiemers and he is taking a more cautious approach. He is thinking she is not ready for nanemba, and wants her dosage on aricept at 10mg as she is early/borderline mid-stage alzheimers. I think the problem, even with specialists, is that this disease progresses differently for everyone, drugs or no drugs, and the jury is still out on whether any of them truly help. Your husband may be someone who would have gone more slowly anyway, or the drug may have really worked for him. Frankly, I feel we are all in one big experiment. I think you are right to continue the drugs - they are obviously not hurting him, and I wouldn't mess with anything right now if I were you. You sound like you are getting the best help available for your husband. He is fortunate to have you. I am so glad for you that you can still enjoy each other's company. I love my mother and cherish our time together. It is still very hard, however, and some days I believe that the two of us would benefit most if I were on the drugs! In any case, best wishes to you both.

CLC - thanks, yes, I checked it out prior to giving them the OK to start it. I am aware of the risks. His quality of life is so poor, a sudden heart attack would be a welcome end to all of our suffering.

CTConnie: you should check out Risperdal as it has a track record of sudden and fatal heart attacks in dementia patients. It's primarily used for schizophrenia and bipolar conditions, but can promote weight gain, which may be why they prescribed it. Just beware of the potential risks, even though he seems to be doing better. One listing from many returns on a search: http://www.rxlist.com/risperdal-drug.htm.

Terrysmith700: And what if the patient has an advanced directive? At what point do medications that frankly offer very little other than another day of misery and pain become an artificial intervention of modern science? If I were to read between the lines, my bet is you, as a family member would fight a DNR or advanced directive to stop treatments that offered no hope of cure. What is the difference between decreasing or discontinuing redundant cardiac meds on a terminal AD patient (and they are) and shutting off life support on a brain dead patient? Or would you just keep the ventilator going ad infinitum? I fully understand that many caregivers are at the end of their ropes, and your have legitimate concerns about the potential for desparate actions. I don't think the original author was making this a call to action - in fact, I think the author was looking for input if you reread the original post. It is a tough call, a call made (hopefully) with full appreciation of the wishes of the patient. I think that many (certainly not all) doctors recognize that there is a huge ethical conflict and personal angst in proscribing treatments that prolong 'technical' life in the face of imminent death or prolonged life support with no hope of recovery. We have become victims of medicine and technology advances; there is a great deal of appeal to the time when shamans treated the dying with pain medicines while the family waited and prayed to their Divine Spirit to take their loved one quickly and painlessly to the other side. If anyone is now playing 'God', it's the health care service that 'preserves life' in direct conflict with the admonission to "do no harm."

And yes, for the record, I personally believe with proper oversight by non-bureaucrats, psychologists and spiritual advisors, that end of life assistance to terminally ill patients should be legalized. Disagree as you will, but a competent patient should have such a right. Your soul made the decision to come into this life; it ought to have the option to exit.

Hi My mother's doctor has indicated that none of these drugs really work in late stages, and he questioned whether they did much of anything in earlier stages. My mother's prior doctor put her on aricept and then added the Namenda, mainly because the drug company was pushing it and I don't think he really had a clue about my mother's condition. Current doctor said to take her off namenda and ensure she has 10mg of aricept at her current stage, but that both drugs together were unnecessary at this stage and expensive. I would really question the doctor about the scripts. Also, my mother seems to have a good deal of nausea, which I think is related to the medication. It makes her feel physically worse so it is on my agenda to discuss with her doctor at her next appt. If he thinks we can take her off all of it, I intend to give it a shot. However, getting him to do that and getting her to go along with it are two different things! I can't seem to get my mother to quit having the pharmacy refill both Rx's even tho her doctor told her two months ago to only take the aricept! At this point, I'M about ready to start taking them myself to see if it will help ME!!! Starting to feel like I am the one with the problem.

My answer is directed to the doctor who suggested stopping heart meds.......I shudder to think that people will read your comment and consider an end of life choice NOT to prolong death by false means will include medications prescribed and taken for many years at their own choice. Doctor you are tipping on the edge of the G O D syndrome...there are some very stressed and unstable care providers reading and writing in this venue and you are implying to stop the meds that preserve life in their loved ones...I am shocked and disturbed.

My mom took Namenda, for about 1year it was not helping here at all so the family weaned her off of it and went back to what she was taking for her mood swings andalso here wandering the med she was taking and still taking is called Mirtazapine that has been treating here well here mood swings are down and has slowed down with the wandering.

Thank you doctor for your input. I agree with you 100%. My Mom has a Living Will/Advanced Directives that we are following. I am very sorry for your loss.

On another note. Namenda helps dementia patients follow commands and really doesn't work in the end stages.