Do Aricept and Namenda really help Alzheimer's symptoms?
My mother has Alzheimer's and we are considering taking her off of her medications of Namenda and Aricept. She was diagnosed 12 years ago and is in the late moderate to early severe stage, probably between 6 and 7. I am not convinced this medication is helping, not to mention it's VERY expensive. She takes many many medications and the costs are getting very difficult for her to pay. I'm looking to see what experience others may have with family members taking these two drugs and if they believe it helps. I think it possibly helped for awhile but she is declining fairly quickly now and I'm no so sure it's helping any longer. Thanks
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.
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 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!!!!!
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?
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.
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.
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.
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.
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.
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.
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!
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.
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.
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.
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.
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.
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.
This a tough one. My sense from patients I've seen over the years is the later stage of the disease, the less useful these drugs are and therefore the greater relative burden of cost and side effects. I would be interested in hearing the experiences of caregivers who have stopped these drugs in late stage disease. Was there a noticeable difference? Any change in appetite, social functioning, or ability to care for oneself?
With regard to the cardiac meds I would make sure you understand what the medicine is for. If is to prolong life certainly it is reasonable to stop it since prolonging life if no longer an appropriate goal. But is is to prevent chest pain, shortness of breath, or rapid heart rate leading to dizziness and falls it may be best to continue it.
Finally, regarding psychotropics (antipychotics) they should be used only for intractable agitation and hallucinations and continued only if they are clearly helping. I explain the risk of sudden death to family members, but frankly this may not be a great concern when the patient is suffering terribly.
My husband had been on both of these drugs since 2001. When his last year was spent under hospice care, we discussed this quite a bit. The conclusion was that he should stay on them. You never know how they are still working for the patient and that therefore it is much better to keep them going. This from the hospice team who is quite qualified and trying to just keep the patient comfortable.
My mother has been on Namenda & Exelon for over 3.5 yrs. now, Exelon about 5. Namenda helped her tremendously. It halted her dementia decline, with no noticeable decline at all. In fact, she improved. It could be a combination of Namenda, living at home under my care, removing her from the awful nursing home w/ uncaring staffs, exercises, stimulating activities at her Adult Day Health Care (for alzheimer's), and other changes. She is doing amazingly well at 99. She has no other medical problems except for dementia, high BP & atrial fibrillation.
My mother was diagnosed with pulmonary fibrosis in April which is terminal. She is in late stage 6 early stage 7 Alzheimer's. She also has kidney issues, and the kidney specialist is playing around with her potassium and blood pressure meds to get her kidneys working better. She only takes 10 mg. of Namenda once a day. Her assisted living facility (where she's been since April) just called tonight (October) and wants to increase her Namenda to 10 mg twice a day.
She is incontinent, has no memory of her past, is starting to show signs of balance problems, and is obviously heading into stage 7. She has dropped over 10 points on the MMSE in a year, and they no longer test her because she does so poorly. Her last score was a 15.
So--what is the point of increasing the Namenda? In fact, I've been thinking it's not helping so why take it?
Both Mom and Dad were diagnosed a week apart a year and a half ago. While Mom is classic moderate/late stage Alz, I am not sure what is causing Dad's memory issues. They both started taking Aricept. We started at 5 mg, Dad took 5 weeks to ramp up to 10 mg. He did fine with it. Mom, notorious for not handling meds, vomited at 10 mg. We are now giving her split doses 5mg in AM and 5 mg at night. She tolerated it just fine. After about 2-3 months, we added Namenda. Both parents are handling it well. The combo has really helped my Dad's communication skills. In some small way we do believe it is helping slow her progression. It is very subtle tho.
CLC: We are so much more compassionate to our pets (I am a dog/cat LOVER). We will euthanize our animal friends before seeing them suffer and endure a decline in a quality life and no one bats an eye (even PETA would agree to euthanize a severly arthritic dog). Why are we so much less compassionate to humans; so much so that it is "illegal" to end the life of someone (even at their own request) to end suffering? Dementia/AD leaves a family grieving for years as they must watch their loved ones fade cognitively, emotionally and physically. Having a strong family history of dementia/AD, I have admonished and ordered my sons to allow me to go fishing, alone, in a boat I shall prepare for a one-way-trip when my quality of life begins to diminish.
To CLC: My mom is 77 and is in late moderate stage ALZ.She also takes Namenda and Aricept and another is Mirtazapine. She is also battling colon cancer. She had surgery last year for it and this year it came back in 2 lymph nodes in her stomach. We were trying chemo once a week since Sept. 2nd and it seems to have made the ALZ worse unless it's coincidence she is declining naturally. On Nov 9th another PET scan showed that one tumor is shrinking but the other has stayed the same and in that area back in the colon new activity is showing. Doc doesn't know what it is for sure, but believes there's a 1% or less chance it's cancer again,but wants a colonoscopy to see what's going on. He thinks maybe just inflammation. We don't agree to do another colonoscopy cause mom doesn't want it and the doc who did the procedure just in August says he strongly recommends not doing it cause of her age for one reason and when I speak to him on Monday I will find out what other reasons he has. I want him to tell the cancer doc the same so he knows it's not just the family against it but also the doc who specializes in that procedure. Because of the decline in ALZ, we've (the family) and the cancer doc have agreed to stop chemo for at least a month to see if she continues to decline on her own or levels out if it was the chemo causing it. But I know either way we will stop chemo after the months time because I would rather see the cancer take her from us then the awful stages of ALZ. She gets around ok and can still bathe and use the toilet,things like that except that I do have to now watch her shower so she cleans good,but she doesn't understand what chemo is and how serious the cancer really is.I am going to check and see how long chemo stays in your system after stopping it. I honestly think she is just declining naturally. She has lived with my husband and I since July 2008,so we have had 2 full years of seeing her mind changing firsthand.Why continue to fight the cancer only to head into end stage ALZ? Since we have to make this awful choice of life for her, we pick quality of life and I know if she could fully understand she would agree. So... yes I understand the battling of 2 life ending illnesses and it SUCKS! I never ever thought I would be making such a choice for my mom's life. It's very hard but I've gotten alot of support of making the right decision from family and this caring.com web site. Thank you all!!
My mother has been on Aricept since 1999, and Namenda was added when it came out on the market. We believe that it has definitely slowed the progression of the AD. She is 90 years old, and has no other major health problems. My family and I think she will outlive us all. Mom is in a assisted living facility that specializes in Alz and they have lots of activities and all to keep the patients occupied, which I'm sure helps with her brain. These patients seem to want to walk and walk, which is encouraged there, and would be a problem in a nursing home, if she had to be in one. Personally, I think that since nothing ever looks familiar to an Alz patient, they are constantly looking for something that does. They all want to go home, but when they are home, they don't recognize that, either. My mother has lived there for 3 years, but still swears she doesn't; even though her name is on the door to her room.
Responding to the person who's mother has cancer; Illness seems to make my mother worse, too. It could be all your mother has been through lately that has made her worse. My mom gets "better" when she is physically "better". Maybe stopping the radiation and surgeries, etc., will help her to function better for awhile. The fact that she doesn't know what is happening to her and why,(the radiation and colonoscopy) is so sad. I would not put my mother through it. Everybody has to do what they think is right, though. For example, my mom needs to have a tooth extracted, but she has no idea what it's all about, and has no discomfort there. So why have her put through that when she has no idea why anybody would even put their hands in her mouth, let alone inject her gum with novicain and dig around?
This disease is horrible, and I wish everyone good luck with their situation. I pray they find out how to either prevent or cure it in our lifetimes.
My husband was diagnosed with Alzheimer's in the Spring of 2001. He was immediately put on Aricept and I noticed a difference in his symptoms very shortly after he started taking it. Then later when Namenda came out, we put him on that also. After about 3 weeks I noticed that he was noticeably more outgoing and participated in family gatherings instead of just staring into space. Aricept and Namenda work on different parts of the brain and work very well together. I would swear that the two drugs have kept him manageable and at home all these 10 years and that he would be gone by now without them!!
In support groups I have heard from numerous caregivers that once their loved ones were taken off of these drugs they declined rapidly. It is not in my heart to take him off of these medications ever!! They are expensive, but my husband is much more precious to me then the sacrifice it takes to get him these medications!! He too is on numerous medications for heart and diabetes but is doing well on them and I would not dream of taking him off of any medications to speed up the process. That is wrong!! As for so-called experts who give advise to take the medications away, no one can really know the affect of these medications unless they live with the patient. Even caregivers who do not live with the patient cannot really understand.
I too pray that a cure will be found soon.
I would advise you to keep her on the meds. It can get a lot worse without them. If you need to, call the drug co., and tell them about the difficulty of paying for these drugs. Medicare also, will probably pay for them. I know you think she is much worse now than when she was, but believe me, it does get a lot worse! Keep her on these drugs, if for no other reason, you will blame yourself for her further decline!
Namenda or Aricept doesn't work it's a bandage I really cannot see why the doctors recommend them . Not only do they not work they make their urine smell horrible.
I am planning on keeping her on those meds as her neurologist recommends. Thank you for everyone's opinions. I will call the drug companies and ask if they offer help. I missed the date to enroll in new drug coverage and that's why her medicare isn't paying for most of it. I screwed that up myself. This year in November I will be sure to enroll early!!
My mom is heading towards the severe edge of Alzheimers. Dr. has recommended Namenda along with the aricept. She has been on aricept for years. I guess my big question is: by giving her namenda are we just prolonging the inevitable or will it give her a better quality of life? She is aggitated and aggressive now off and on throughout the day. I am leaning towards letting nature take its course.
Looking for others who have experience with namenda in the later stages of this horrific disease.
My 92yr old husband was hospitalized after a severe infection that resulted from a deep cut sustained in a fall. He was put on antibiotic drip for 4 days. In the meantime, the hospital doctor put him on aricept, thyroid medicine, ordered a CT scan, and two xrays, all without my knowledge. I did not continue the medications. The aricept caused constant diarrhea. The nurses used diapers for him. His PCP agreed with my decision.
After posting this comment, I realized it didn't relate specifically to the previous post. Obviously, I was upset with the actions of the people at the hospital and wanted to vent.
I find all of the posts very interesting and informative. I believe that I am at only the beginning of being a caretaker and I'll consider every bit of data I get. Thanks to all, and God bless.
I have only one experience with Alzheimer's and that is my 87 year old mother who was diagnosed 3 years ago and placed on Aricept. Her communication slowly deteriorated until about 1.5 years ago where she spoke hardly a word and only if spoken to. Her appetite decreased this past month and she stopped eating solids but still drank fluids. She could not keep herself awake and slept in the chair or in in bed. Everyone assumed she had about a month or two left to live and would die of starvation or would just go to sleep as she could not get her brain to wake up.
However and interesting thing happened. The doctor took her off her Aricept and 2 weeks later she came back to life. She can now carry on complete sentences, she is eating solids, she is focused on wanting her hearing aids and glasses which she had not cared about in over a year. In fact, she said, "If you can't hear or see well it makes things very difficult." She remembers our names now and although she thinks she is living in Paris (she lived there for 4 years in her early 20's) with someone she calls her husband, she is functionng quite well. I smiled for two days on my last visit bcse I had (sort of) my Mom back. Not sure how long this will last but I am countng every day as a blessing.
I have now heard from 3 others that the same thing happened to their Mom's once the medication was eliminated.
My Mom was on both medications - Arcept and Namenda. Both medications only slow the process down...they are not a cure all. She has been off both for sometime....diagnosis in 2004 she is 86 now. Families need to look at the health of their love one and the affordability and use of other medication sometimes. My was Mom taken off the medication and the Doctor was positive and supportive in the decision we made together.
We took Mom off Aricept and Namenda and she improved for about three months. She is now at about the same stage she was in at the cessation of these drugs. I really do not think these drugs are effective except for increasing profit margin.
My husband, who is 93 years young, started Ariscept three months ago, then Namenda two months ago. These two medicines have given me back my husband the way he used to be. That is a blessing for both of us. He calls the Ariscept the poison pill, but he does take it begrudgingly. I tried to explain to him that I take Plavix for my mended heart, because I have a bovine valve/double bypass, to help me live, and he takes his meds for his brain to help him live. As long as we can enjoy our family, friends & life......every day is a gift from God.
My mom is 84 yrs old. She was diagnosed w/Alzheimer's/dementia 6yrs ago. She was first put on Exelon, but because of side effects could not take it. Then she was put on Aricept and then Namenda. I really could not tell a difference after she started taking the drugs, but believe that they have probably prolonged the stages. I cannot be sure of this, but that is what I believe. Now though, she is in the severe stages and I do not believe that these drugs are working anymore. You cannot understand her when she speaks because she makes no sense and puts in words that don't apply, so there is not much communication, although I do try. She remembers myself, but only part of the time and she does not remember my brother, or rest of the family at all. She does not remember anything else in her life either. Five minutes after she eats, she cannot tell me what she ate. She had a stroke last week, but seems to be recovering from that. When you speak to her, she has started just looking into space, like she can't even hear you. She is totally dependant, she cannot walk by herself, feed herself, change or bath herself,she has to wear diapers, any of the normal things in life she cannot do. When she had the stroke, I spoke w/her dr. and we agreed to take her off the Aricept and Namenda. He agreed that it was time. I don't know how much longer she can last, but it will be a blessing for her when she passes. She would hate to know she has come to this. Each person w/dementia is different and I feel you have to look at all aspects before making a decision whether to take off meds or not. You also have to look at the patient's wishes. In the first stages, Mom signed a DNR, so I am abiding my her wishes to not prolong this anymore than it has to be.
Our Mother is also in moderate stages of Dementia, at first ruled as Alzheimers, now is diagnosed as Lewy Body dementia. The first thing she was prescribed was Aricept but she could not take it. It caused leg & foot cramps as well as sleeplessness. So, now that she is diagnosed with the Lewy Dementia, she has been prescribed Namenda ~ she has only been taking for about three days. So far, she has experienced dizziness, stomach cramps, and weakness. However, she had a good day yesterday and was able to ride with me to the shoe store for shoes. She has not had any vomiting with it at all. Is it normal to feel the way I have described when you first start taking it?
my mom has been on aricept and namenda for years.it may have slowed alzheimers down somewhat but i really dont think to any great extent. my problem is that i feel guilty not giving it to her and the neurologist cannot refill unless i drag her into the office and this is extremely traumatic for her.
My mother has vascular dementia complicated by a stroke 8 years ago. She was on Aricept for approx. 7 years. She had several episodes of fainting with no known cause. I thought it might be related to the Aricept. Her MD and I decided to stop the Aricept. Within a month or so she declined drastically. She had major word finding problems and overall confusion increased. She began Namenda 2 months ago. She is currently on 10mg twice a day. Her language abilities have improved and she is less anxious. However, she has began to have dizziness and headaches. I'm thinking it is the Namenda. I'm wondering if decreasing the dosage will help. Has anyone else had this experience. To answer your question both meds helped her but with side effects.
dad . 90 developed dementia when leaving the hospital for pneumonia. Kept saying he wanted to die , so assisted living made us put an aide 24/7 at $24./hr for days. Put him in a mental hospital to even out the meds. came out to a crappy life of sitting in a chair/ lying in bed all day. I'd want to die too. He's on selegine aricept. Hope this works
I took my husband off of Namenda. I'm afraid that if we are honest with outselves, there isn't much help for dementia right now. He lost weight, became withdrawn, irritable and just not himself. I think the quality of life means everything and I just try to make every day as pleasant as possible and pray for a miracle pill to become available. He also started bleeding out the penis which I just couldn't live with and neither could he. All tests came back o.k. as to his urine, blood, psa, etc. so my deduction was that it was the medicine. I'm so glad to hear others have taken their love ones off their meds too. We're all trying to do the right thing.
Well. I just lost my mom on July 14 after 5 years of caring for her with severe dimensia which for all intents and purposes was Alzheimers. I took her off the aricept and namenda about a year ago. When I had to have her admitted to hospital because she had a fall and fractured her leg I realized I could no longer care for her in the proper way and so I had her in a nursing home where she declined quickly and in two weeks she passed. In the home theyput her back on those two meds but I saw no improvement. I was her full time care giver for 5 years and it was my honor to do so,although it was very difficult and will take some time for me to get through. I am not sure if these drugs really will help, especially since your family member was diagnosed 12 years ago. That is a long time. Personally I would consider letting nature take its course, as much as you want to keep them I guess you have to think of what is right for them as well as yourself. I wish you all the best. Take care of yourself as well.
After reading Paul's stagement re his mother's illness, I am sorry that he didn't keep her on the Ariscept/Namenda. My husband has now been on it for about 5 months and it has made a world of difference in our lives. He is reading, doing crossword puzzles again, and taking an interest in the news and politics. Even his walking has improved and he is able to take care of his own bathing, etc. He has a great appetite and has gained a little weight that he needed. Our family has visited us recently and they also noticed the difference in his personality when they were here a year ago. Apparently, the meds do not work for some people, but I am fortunate that there are such drugs that can improve the quality of our lives in these not so golden years. He will be 94 next March and I am doing everything I can to make his days comfortable and pleasant. It has aged me alot, but tomorrow we will be married 52 years and I am grateful for our memories. As our son says, "it is what it is"........taking one day at a time. joanne
Thanks Pioneer but my mom was taking it even before she had any real signs of Dimensia as a precaution by doctors orders and even after 5 years she deteriorated quickly not being able to talk the last 2 years and lately her ability to walk also was going by the wayside. In fact the day she fell I was trying to help her with a walker. So in fact Aricept and Namenda work for some but for my mom, although it most likely prolonged things, she never had the results that your husband has. God Bless you both and I hope he is with you for many more years. I have no regrets with my mom. I did the best I could.
D.A.H. --- So glad to read your comment; I thought I was the only one with an Aricept-intolerant mom. My mother also became very ill; however, it didn't hit her until 40-45 days later and no one suspected the Aricept immediately. She ended up in the hospital for 7 days with a torn esophagus from her vomiting so violently for 4 days. Poor woman suffered so badly. Anyway, it was eliminated from her pill regiment and she was better in a week or so. Next we tried Razadyne and the Aricept patch with the same results for both. Lastly, we put her on Excelon which seems to agree with her system. BUT now I'm wondering if it is doing any good or just wasting her money. She's also on Namenda which she's always been able to tolerate but again, is it doing her any good? I recently heard of a study that says all these drugs are absolutely not helping the way the drug "scientists" had hoped so my question: Should she still be on both or either one???
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Aricept and Namenda take time to start working, I think you have to give it at least a month unless there are serious side effects. They all have effects at first that lessen over time. I was upset that my long distance caregiver(I was 3 hours away)took my Dad off Namenda without asking me, they asked the dr who I don't like anyway. They thought he couldn't afford it, but that wasn't true. I don't know if that was what affected him or not, he did get worse a couple months later. Like it can take a month or two to see it work, could it take a month or two to see worsening effects of taking someone off of it? It's been a year he's been off it, he's on 10mg Aricept also. And 50mg Zoloft. The dr also tried to put him up to 100mg Zoloft in January and I noticed right away him having communication problems and bad delusions. I made him put it bad to 50...how can you jump a 82 year old that's only about 145lbs 50mg? What made the best difference though was when I was able to finally get him to a nice assisted care facility near me. He was only getting caregivers 4 hours a day. When they were gone I'm sure he was afraid and was having hallucinations and delusions that upset him. Getting him moved reduced the hallucinations to practically nothing(not drugs!) and he has delusions but they are happy ones now, he thinks he lives near the beach and at a place he worked in his youth. The right place makes a world of difference. He chose 2 years ago not to get a heart valve replaced. But I would never take the heart meds away, I would hate for him to have a stroke and live through it....you never know, they don't always die from that. Heart surgery would probably advance his Alzheimer's. Why have the heart ok but no memory of anyone any more, or be able to function otherwise? He did have shoulder surgery after a fall 2 years ago because that would have limited his current functioning. It was only 1/2 hour surgery, but he was in the hosp for a couple days because it did cause a lot of delirium. But I am finding any time he is in the hospital he gets delirium now, and I will avoid that as much as possible. He needs a pacemaker battery soon, but they do them outpatient now, I would not withhold that from him. But I would not do cancer surgery or chemo if that was his problem...quality of life is a factor, the shoulder surgery allowed him to be able to still dress himself and shower etc....he actually enjoys physical therapy, that's the highlight of his day. I think I would rather have discontinued the Aricept and kept him on the Namenda, but he seems to be doing well right now so I'm not going to mess with it... One more plug...Fosamax!!!! Two years in a row he broke bones, shoulder, then femur that didn't need surgery but he was wheelchair and rehab bound(very boring and he went downhill during). The dr put him on it and he fell a bunch more times 6 months later and never broke another bone. Breaking bones are the worst thing for seniors and if you can prevent that it's great. That pill definitely worked. (The falls were from being alone and not exercising and eating and getting meds right, assisted care has helped with that, he hasn't fallen since and gets pt and plenty of room to walk on his own.)
This is a followup to one of my comments a few months ago. My husband is still on Ariscept/Namenda and doing great! His dimentia is hardly noticeable now. Family and friends who have visited us this summer can see a world of difference from a year ago. He is interested in politics again, reading, writing and working on crossword puzzles.......so grateful for these two drugs that can give back the quality of life one has lost. We are truly blessed. I will never take him off these drugs. He will be 94 in a few months. pioneer
Namenda and Exelon works for my mom. She is in mid-stage. She has been on Exelon 2 yrs before Namenda, no special benefit. But when she started taking Namenda, there was tremendous improvement, much more alert, even her incontinence got better. This also has a lot to do with my one-on-one care for her at home vs. the nursing home. I brought her home and cared for her at home.
Namenda kept her from deteriorating for 4 yrs. Now, I see a slight change, but she is still doing well. I believe Namenda has a lot to do with it.
Several caregivers at the various support group I attended over 4 yrs also reported marked improvement in their loved ones.
I am an internist, geriatrician and Hospice doctor, so I have been working with AD patients and families for about 30 years now. The answers above really reflect the variety of responses people have to these drugs. In general, the most benefit is gained in the early stages. The benefit tends to be modest in most cases; sometimes, it is more striking. Sometimes, there is no perceptible benefit at all. I would say if your family member has responded well and seems to be stable and enjoying a good quality of life, keep them on the meds. If they have immediate side effects, like nausea or diarrhea from Aricept or hallucinations from Namenda, stop the drug. If they have progressed to late stages where they are dependent in all ADL's, no longer communicate, and are starting to have trouble swallowing then stop the drugs. I have literally never seen any benefit in a patient this advanced or any harm from stopping the meds. The money would be better spent elsewhere, like on a home health aide to give the caregiver a break. As for treating cancers, kidney failure and heart issues, please don't even think about it. God is offering the sufferer a way out of their failing brain and body, don't torture the poor person with painful testing or treatments they can't understand just so they can go on to die of aspiration pneumonia and decubitis ulcers. Hospice is a great option for patients who are in the last stages and will provide help with meds and equipment, skilled and compassionate nurses, HHA services, social work and spiritual support.
My father is on Aracept & Namenda, both priced fairly. My mother was just put on Donepezel(Aracept generic) last week and I was shocked at Rite-Aid's price of $276.79. After finding a price chart on the Alzheimer's Assn, I began calling around. We found Costo's to be the best ($15 nonmember price; $8 member price). Interestingly, the cost of Aracept around the U.S. is what many pharmacies charge for the generic. Best wishes to everyone who is helping their parents - it's not easy. That's why we need and appreciate sites like this.
As a part-time, non-family caregiver for one precious lady for almost two years, my prayers and heart go out to all. I think "geriatrician" very adequately sums it up. I would like to add--it is ABOLUTELY imperative that, when talking to your loved one's medical professionals, you have full disclosure--the nature of any falls, every single thing so that they can make a good plan of care. Also, tell them that you are worn out too. In my situation, the spouse of the child of the Alzheimers lady did not present the facts and the hospice nurse, upon her initial intake, immediately discontinued Exelon Patch and Namenda. I am not sure the spouse was aware of all the facts; as well as being tired and worried about their entire youngish family and is trying to look at the big picture--i.e. this disease is progressive and without a cure. I cannot be certain at all that her decline is a progression of this disease, as the hospice nurse feels it is. There are too many other factors that may have made it appear as disease progression--'catastrophic events', one right after another, that my lady's body was contending with--two falls, unrelated to the disease progression, as well as her adult child being drastically absent from her care. I am not advocating 'prolonging' her or anyone else's suffering in this or any disease, but I am also concerned about her quality of life. She has become very, very agitated and incapable since--which it is being handled by adding anti-anxiety meds--in her case, when they wear off, she appears to be even worse. I just do not know, but I hate it. But as a non-family member, my thoughts/concerns are not something that is taken into consideration. My education level is not to the level of the trusted family doctor as well as the hospice company coming in, plus I have been a 'family friend' for years. . . so my experience both previously and now with their Mom, as well my limited education, and lastly my 'gut feelings/instincts' are not something they are interested in. When I am there, I will continue to hold her hand and do the best by her, trying to give her 'moments of joy'. I do wholeheartedly recommend that book, Creating Moments of Joy by Jolene Brackey, to everyone that has to deal with someone with Alzheimers and any related dementia issue. Thank you one and all for walking through this very difficult time in your loved one's life with them, and for caring.
For what it's worth, my 90 year old mother-in-law was diagnosed in July with moderate A/D. Aricept gave her such vivid, horrible dreams that she would cry for hours upon wakening. Discontinued. Namenda made her so confused, it was pointless. Discontinued. Exelon caused her to lose 16 pounds in two months. Discontinued. We notice no difference in her behavior since being off the meds.
Three years ago, I became the full-time caregiver for my mother who will be 94 in a few months. She ran out of money for Assisted Care. She was on Aricept and it became so expensive once she hit the "donut hole" and we were paying $200 a month. I talked to the Doctor and the Pharmacist and no one would actually say to take her off of it. They said if she needed to go back on, it wouldn't be as affective. As affective as what? The only thing Aricept did for my mother was give her nightmares. I stopped it and she is doing great two years later. I have a couple of volunteers and family members who visit weekly and we do a lot of puzzles, word searches, the Knifty Knitter, etc. to keep her mind going. I think this one-on-one activity is the greatest benefit of all for her mind. She never watches TV which is usually all they provide in care facilities.
My mom has been on Namenda for a period of six months and did not do very well. I have decided to let nature take its course. My mom had a very bad reaction to Namenda. She hallucinated and was combative and she had no appetite. She also did not sleep well. I did contemplate a combination of Namenda and Aricept and decided that because my mom is in the middle (7) stage she would be better off if she does not take any meds except for her high blood pressure and diabetes. She is still capable of some basic task like brushing her teeth, eating, showering and dressing herself. I want her to enjoy the little time that she have without being clouded by medications prescribed for Dementia/Alzhiemers. I would like some feedback on "melatonin". Has anyone tried to as a sleep aid for patients with Dementia? Thank you!
Personally I SWEAR by melatonin... It works VERY fast on me - 5 mg. chewable pill, grape flavored at Walmart. As far as a dementia patient, my mom uses melatonin (same dosage) and sometimes it works and sometimes it doesn't. I've even doubled it a few times - just to help her get to sleep. When I do, she sleeps soundly and well all night. When she takes the single dose, it's a crap shoot... sometimes yes, sometimes no. But since it's a natural product, I don't feel bad about doubling it occasionally (a couple of times a month) Won't know til you try.
My FIL has been on Aricept for approximately 5 years and he has had a recent decline and is at late mod/early severe. Along with his Physicians approval, we recently stopped the Aricept. It has been 2 weeks now and we have seen slower movement and a bit more forget-fullness. Is it due to the recent stoppage of the medicine or recent decline? Who knows?
What I do ponder is why are we so afraid to let nature takes it coarse? This man is a walking, ticking, time bomb waiting to go off from numerous different ailments. We are not stopping any of his cardiac or diabetic meds because we do believe in symptom control. It is all so frustrating and confusing. FIL has 2 other sons besides my husbands that are both wrapped up in their own lives. One of them comes by almost every weekend but doesnt truly get what its like to be a 24 hr caregiver. I often become upset when he talks about all the fun things he gets to do without having to worry about what he is going to do with his dad. The other son is of no help at all and doesnt even call or visit...well, unless he needs money from his dad which we no longer allow him to have. Urgh! Alzheimers is so cruel and long lasting. Shoving pills down someone to prolong a terrible illness seems so cruel. Maybe we should start thinking about how we would feel if someone told us what we needed to do every minute of the day and couldnt control our own bodies/functions? Would you be happy? Would you be happy to know that you wont recognize your children or maybe even your spouse? The hurt that comes to the loved ones who care for these individuals can be so taxing and detrimental to our own health.
My mom has been on aricept and many other drugs since 2005. She hardly recognizes me or any family member. We decided to remove all drugs (high blood pressure, diuretic, anit anxiety, etc.) since her quality of life is so poor. She is wheel chair bound and has a dazed look 90% of the time. She also just went on hospice 4 weeks ago. She is improving believe it or not. She actually knew me and that my birthday was coming up yesterday. Here we thought we were killing her and she is improving. The specialists say she just may feel better without all the meds and that sooner or later she will crash. If she does, at least she had a few weeks knowing us and feeling better.
My mother has mid stage Dementia. The neurologist believes it's mixed causes. Aricept and Namenda have made a huge difference. She ramped up slowly over about 2 months between both meds, and while she has had some diarrhea it wasn't a big problem. She does have vivid dreams but usually she enjoys them. Only once did she complain of a nightmare. She remembers important events for the most part, and is definitely far more alert, interested and engaged. The problem I have now is that she has enough cognitive functioning that she feels she should take care of herself and go home and be "normal." She is living with me since January since i was the only family member with time available. She does not understand there is a new normal. The medication is definitely working, and many days there is a positive impact. But she needs constant entertainment, and without that she becomes fixated that she NEEDS to go home and she MUST go home. Her home is very isolated, and she does not believe she needs a caregiver there. She is making herself, me and her other children miserable. I'm really struggling. The drugs are a real mixed blessing for us.
My mother is in mid-stage dementia and has been on Namenda for approximately 3.5 to 4 years. She has greatly improved, and although there could be other contributing factors to her improvement, I have to assume that the medicine is a part of it. Maybe its not, but it could be, and the reward of her quality of life greatly outweighs any risk.
Her doctor recently informed me what most everyone here is saying, that at some point the medication will no longer help. I think when it gets to that point it will be obvious that she is beyond help, and at that point I will stop the medication (maybe). My mom doesn't always remember who I am, and recently asked me what her own name is. Sometimes she speaks what sounds like gibberish, other times she is extremely lucid and clear. A different doctor recently advised taking my mom off of Namenda because she fell and injured herself severely, and the doctor says Namenda increases fall risk. My mother's primary doctor will advise me of her recommendation, and with all of that information, plus what I have researched myself, family feedback and God's guidance I will make the final decision, not a doctor. Doctors only make an educated guess; its a very educated guess, but its still a guess and they don't KNOW and are not always right.
In my experience, insurance and sometimes doctors are all too quick to throw your loved one away like trash. If we don't do the research ourselves, find out about the best options ourselves, consult other knowledgeable people, get feedback from family, ask GOD for help and guidance and advocate tirelessly for our loved one we might as well throw our loved one away too. Doctors have their opinions, but at the end of the day, my mom is just a number, a body taking up space in their hospital, taking up their time and money. I love her, and I'm going to be the one to decide if the doctor's educated guess lines up with what I believe will result in my mom's highest quality of life.
My other two-cents, about end of life, is that a sudden heart attack is the way to go. I hope my mom's heart stops before she declines further to the end stages. If you have a loved one die suddenly, believe it or not, you are extremely fortunate. Getting the chance to say goodbye is not all its cracked up to be. Seeing my highly intelligent, very well-educated mother slowly decline mentally is beyond torture, its like living in absolute hell every single day. Its stressful, its depressing, and when I think about it I just feel this overwhelming feeling of anguish and restlessness because I am completely helpless and powerless to do anything to stop this suffering. I also watched my father slowly die of cancer. It's sheer hell on earth. To anyone that lost a loved one suddenly, be consoled, because I would much much rather have lost the chance to say goodbye than to watch someone I love so dearly slowly die.
Experiencing this pain is my reminder that we live in a fallen world, where death and disease reign. When we pass from this world into the afterlife, if our faith and hope is in Jesus Christ we will live forever in Heaven; no more disease, no more suffering, no more tears, and no more goodbyes.
My Mother in law has been on Aricept for about 4 years for mild alzhiemers.. it really did help for the past 4 yrs. but now am seeing signs of her memory getting a little worse....I was told when she first started on Aricept it was not meant to be a long term drug.... Namenda does not do anything at all, in fact my Mother was put on Namenda, and after about 6 weeks we took her off of it.. there is really no value in taking namenda, but Aricept can help temporarily.. from some of the studies I have read this year, people who eat a lot of tumeric seem to have some of the plaque go away, it seems to help.. and I have also heard there are suppose to be new better drugs on the near horizon.
My husband was diagnosed Jan 2009 with early onset dementia or Alz. We feel he had problems starting around 2004 when we look back on his behaviour. The doc put him on aricept and 50mg of zoloft which seemed to help. 2008 when he had gallbladder surgery was what had put him over the edge. He has never been the same since. He's always been good natured but for the last 6 months becomes agitated and rough when I'm trying to bath him, toilet , and dress him. My dear husband had always told me if he was ever incapacitated or didn't know anything he would not want any measures taken to prolong his life. He would be devistated if he saw himself with feces all over his hands and refusing to let me clean him, urinating in inappropiate places, spitting all over, grabbing me by the throat when I'm trying to help him. It would break his heart as it is breaking mine. He is now 67. I am 62 and we have been together for 47 years. I have faced the fact that I will have to put him in a nursing home. I feel that those of you that have your wonderful parents and spouses that have lived full lives into they're 80s and 90s are very lucky. This disease is horrible but its much worse when the victims are hit with it early on when they are robbed of they're best years after working hard all their lives. I'm going to honor what my darling husband would have wanted and let him go with dignity, nt being force fed and pumped full of antibiotics and meds but kept comfortable and surrounded by we who love him. This will near kill me. I have cried a million tears already. He was a brilliant person loved by everyone but his broithers hardly come around anymore, they can't take it. If I'm ever diagnosed with this I'll do myself in rater than let my family watch me disinagrate into this living hell.
Magnus- we had aggression issues and Seraquel helped a lot. My husband never tolerated antidepressants like Zoloft... Made him mean. He is on both Aricept and Namenda.
Free assistance is available through the phamaceutical companies within certain guidelines. I have been receiving my mother's medications at no cost by following the application processes through the assistance programs. Go to the website www.needymeds.com to see the list of medications and available programs. It has saved our family thousands of dollars on her Namenda and her Aricept. Best of luck to all.
I believe that Aricept wears off. Once someone has passed a certain, the drug is no longer effective. I am in my very early stages (far earlier than most due to my strong family history). I was just prescribed Aricept and have been taking it for a new days. What I have noticed is that my sense of smell has changed. Cat urine now smells like oatmeal. How can that be? Should I be alarmed or should I laugh.
My father is at the end stages of Alzheimer's, after 12 plus years with the disease. He has been in diapers for over a year. He cannot use utensils to eat and resorts to his fingers. He doesn't recognize anyone, including my mother, but somehow senses that he needs her to help him. He cannot bathe or shower. He wets through his diapers every night. He cannot brush his teeth or shave. He last drove a vehicle 7 years ago. He barely speaks anymore. He hasn't read anything in 6 years. He has been on both Aricept and Namenda for several years. I told my mother it's time to tell his doctor that the drugs no longer seem to matter. There comes a time when enough is just enough, especially when it no longer has an effect. And that's aside from the expense. You don't mind the cost if it helps. When it becomes obvious that we are coming full circle and there is no benefit from the medication, then it's time to let go and let God. This disease is the most insidious and unforgiving disease on the planet, as far as I am concerned. It scares me to think that this is my future or possibly that of my children or grandchildren.
I'm not sure how long this thread about meds has been going. However, I do believe that medication is only effective in early stages. My Aunt, Mom, Cousin and sister all died from the disease. My sister was 12 years my senior. With such strong family history I started taking steps early 2011. Saw a neurologist had a brain scan. Very tiny amount of shrinkage. Had another scan this year; showed no change (yay!) I was put on Aricept 5mg. I think my problem is more ADHD. However, I feel great. I passed all my neuro tests and I didn't feel it necessary to increase my meds to 10mg. Since I have been so vigilant, perhaps the disease will not advance. Who knows. I am fine and life is good. My memory is better than most who are much younger than me.
Ststistic show slight improvement in scores for aricept, but little true clinically useful improvement. Aproximately 1 out of 10 will show slight clinically useful improvement. about 1 out of ten will have to stop due to side effects. Many studies are biased to show improvement (treating drop outs as if they had stabilized rather than actually dropping them from the study.) An indecpendent study found NO difference in institutionalization rates with this med. This is largely true of the class of drugs that includes donepezil (Aricept), galantamine, rivastgimine (Exelon.) Namenda works in a different way, but Dr Rabins of Johns Hopkins says that some colleagues who opinion he values suggests that the improvement is so little that it gives false hope to families and shouldn't be recommended unless families really want to try it. My personal experience with my 95 year old father in law is that it helps keep his behaviour less difficult to manage, but doesn't help his memory nor his confusion.
My mother has AD and was diagnosed about 4 years ago. She is 89 and in mid to late stages. She cannot communicate, and is completely dependent on others for all her care. She cannot even feed herself. She can still cooperate with us to get things done for her. She has been on Aricept for 3 years and I am going to start giving her Namenda because I dont want the AD to progress to where she cannot swallow or cooperate with us and will be completely bed ridden. I hope that the Namenda works and delays progression and hope that allows her a sudden death from some other cause. She is a breast cancer survivor, has thyroid disease has had hypertension for as long as I can remember. Because of the difficulty in getting her to take meds, she has not been taking any medication for hypertension for the last 3 years. The hypertension has disappeared! All those years we worried about heart disease and her heart seems to be fine without any medication. It's very ironic. I would not discontinue medication for AD because the slow progression as they loose more and more of their abilities and eventually cant swallow and then cant breathe seems like a horrible way to die.
As a nurse, I feel that many of you deserve the proper medication education regarding Namenda and other dementia medications. No these meds will not completely stop the progression, they are given in the hope that they slow down the progression. However, genetics also plays a part in the progression and no matter what interventions we give as health professional the disease will progress with some faster than others. For the fellow that states that the Dr was playing GOD by taking away the heart meds, shame on you. We take them away to allow GODs plan to take over. I assist and have had clinicals in hospice care and particularly hospice in the home environment. I have seen a patient taken off their heart meds and continue to tick for another 2years. Yes, we do so that the patients have a better quality of life vs # of years. So often it is a struggle with the families that want to keep their sick their family member alive that it is hurtful to watch. I have had both my parents pass away on their own terms rather than fighting for # of years to live. One to cancer and one to advanced diabetes resulting in kidney failure. I respect them. Hospice is a beautiful experience and I implore everyone to embrace it before your family member is unable to speak or swallow due to the progression of dementia or any other dz.
The whole article is very informative, however, I find the last two paragraphs very important.
Why do you suggest hospice before our loved one cannot speak? Never heard this. Thank you
I hope everyone has a chance to read what I have experienced. My Dad has been diagnosed with early stages AD. And like book work the medical profession has prescribed MEDICATION.
3 weeks ago I flew to his home to find my mother and brother preparing his funeral and determined that he might live 4 or 5 months. He was totally bed ridden.
FYI - recently (past 6 years) I fought cancer with food. And I began to apply what I learned about nutrition, routine, sleep, hydration and exercise to this man who was all but dead.
By the 3rd day he started a daily BM and sometimes 2 per day. Healthy ones!! He started coming out of his fog. Oh, on the first day I took him off all medication. All side effects (namely diarhea) displaced! His energy levels started coming back IMMEDIATELY (whtin 48 hours) and within a week, he was walking with assistance and eating specially prepared foods focused on feeding the BRAIN.
He has now played dominoes, does his PT with determination and tries to remember. He also wakes up in the middle of the night and walks to the toilet. Something he hasn't done in almost 1 year. Just a total change.
I will add, that everything we've done for him has been with FOOD. Nutrient rich foods - focusing on BRAIN Nutrition. And at the same time cleansing his body of the terrible narcotics and garbage my family was feeding him. Totally eliminating SUGAR from his care and meat, milk, and I could go on and on.
I bring this to your attention so to help . Your love one may not respond as my Dad did. But I know it will help them more than any pill.
I can send you more information if you'd like to know more. One good source is Mercola.com. He's known as a kook ... but his stuff works for those of us who need it.
Good luck and blessings to all of us.
My mother is 86 and was diagnosed with Alz at age 81. We started with Aricept and the side effects were bad but once we added the Namenda and Lexapro to balance mood stabilization we started to see a positive response. My mother does not wander, eats 3 meals a day, showers daily is not agitated. I have her on a pretty balanced cocktail of the pills with split doses taken in the morning with breakfast and night before bed. She takes no meds during the day. With her night dose of Aricept she takes Lexapro and Seroquel and Depakote with her heart meds. In the morning she takes Aricept and now takes Namenda 28 , she also takes the Lexapro and a supplement called Procera. I am hoping to start a facebook page soon called Life Two Weeks at a Time. Look for it to follow our journey. The disease is horrible but somehow with the 5 years I have put into the medication protocol, oxygen therapy and supplements we have seen such great progress. So in the end stopping the Aricept and Namenda may not be the answer. Perhaps it is what you can add to them.
DRUG SAVINGS INFORMATION: I am writing because it is very apparent from this blog (and many others) that so many families are unaware of the enormous savings of getting your loved one's medications at either Costco or Sam's. Obtaining my father's generic Aricept (Donepezil) at Costco dropped the price from well over $100 dollars to only $7 dollars. Obviously, the dosage affects the price, but the savings are always enormous. The cost of a yearly membership at either club store is approximately $50, so it is well worth the expense. (Special note: If you chose to do a higher membership at Sam's, there is an added discount applied to generic medications.) I belong to both clubs, specifically for the pharmacy feature. Always ask the doctor for a paper prescription, so you can shop it around to get the best price - filling at your local grocery store is often very costly. Please investigate this avenue, before discontinuing drugs on the basis of cost alone. I am perplexed as to why so few doctors and caregivers are aware of this. I hope this helps someone, so keep this knowledge train going and please pass this information on to others. Good luck to all of us.
if the expense of the medication is an issue,contact the company that makes the medicine. Some companies provide medication free or at a reduced price for those that qualify. We received namenda free for my husband after applying and providing the info they requested. a 3 month supply was sent to the dr ordering the medication and we picked it up at the office. then you let them know when you are getting close to needing more and more will be provided.
My grandmother has been taking namenda for 4 years. At first itworked but now its not working as good. We are wondering if we should take her off of it. She's been calling me my cousins name and has told me the same story every hour . Im getting worried about her
This just now crossed my mind. I have no idea why I didn't think of this much earlier! I used to take "Niacin AMIDE".....NOT NIACIN...Niacin will cause too much of a blood rush. Niacin Amide is much more gentle but opens the capillaries in the brain so you can function much better.
I recently questioned a 60-something pharmacist about the benefits of Namenda at a health fair. His reply was refreshingly frank and consistent with my observations of 88 year old parent. The pharmacist said, " there may be some benefits the first six months of treatment". Parent was taken off the drug three years ago and there hasn't been any change in his behavior. Diagnosed as "mid level" dementia in 2013. He stopped driving in 2007 and 6 years later he couldn't draw the face of a clock and situate the numbers correctly. At age 88 he is off ALL medications, which surprises most medical professionals. He has a healthy appetite, feeds himself and address "bathroom duties" on his own. He seems to spend too much time dozing off and sleeping but can still shoot a decent game of 8-ball. One physician claimed excessive sleeping is a sign of dementia and that may be true, but doesn't virtually everyone slow down with the onset of old age. What percentage of senior citizens are "super-agers".
I was diagnosed with ALZ about 10 years ago. Yes, I have severe short-term memory. For meds? COSCO is much cheaper than anyone else. THIS IS IMPORTANT: I noticed that when I added "Niacin Amide" (NOT Niacin...too much blood goes to the brain all at once.)
Another OTC is Ginkgo Biloba.
I haven't become worse.
NO, I am not telling you NOT to follow Doctor's Orders; however.....
New Alzheimer’s Drugs Continue to Fail Where Coconut Oil Shines. - See more at: http://coconutoil.com/coconut-oil-research-alzheimers/#sthash.SusotSK2.dpuf
Buy the donepezil and/or memantine online through a "somewhat" reputable Indian pharmacy. Spend $20/month or less for both medications so you don't have to withdraw her from the meds completely. And yes, late-stage, they have arguably little impact on advanced AD. Good luck.
...and sadly, all of the supplements and OTC choices listed by others above will have a negligible effect compared to memantine/donepezil (once again, as it is a little late in the game to expect diet and supplements to have a big impact now). Getting the meds cheap online is your best bet in slowing further decline if you believe it is necessary. If it is already very advanced, consult with your parent's doctor or catch them doing rounds in the morning for a quick question on how much worse it can get withdrawing the meds. Your definition of advanced can be a lot different than that of the medical establishment.
My dad was on Aricept and Namenda for many years and recently began having issues with dizziness and nausea. I spoke to his new doctor who indicated that there was little evidence that these medications do anything and that the side effects he was having were most likely from these medications. We gradually reduced his dosage and now he's taking neither. Not only has the dizziness stopped but he seems much happier. Wish I had done this sooner.
I would like to mention that you don't have to be a member of costco in order to get prescriptions filled there
There is no evidence that Namenda is helpful for mild Alzheimer's and it is usually less effective than Aricept. But neither is as dangerous as Risperdal, Seroquel, Abilify, Zyprexa, or Geodon. All those 5 drugs (and the generic versions) are intended for patients who are schizophrenic or bipolar (manic depressive), NOT for patients who have dementia. They have a "black box warning" -- the most serious warning -- saying they can cause sudden death in older patients. You can see those warnings and others if you go to drugs.com and look up the drug and the warnings. Many nursing homes prescribe those drugs because they make the patients docile, but they are potentially deadly. And, another side effect is diabetes.
I have been caring for my mother for about 5 years. She has been taking Aricept since Oct of 2011, I think it helps some. She was on Namenda for a couple of years but was taken off last fall because she was falling a lot. The doctor said it could be contributing and since it didn't really "improve" anything only "maybe" stay it off a bit we choose to stop giving it to her. She hasn't fallen at all since that. I can't really tell if the Aricept is really doing anything now but it's not hurting so I'll continue it just in case it's actually helping. She is in Mid-Late stage.
I should add that I do feel both helped keep her memory more alert during the early stages and may have helped delay the progress somewhat.
My husband (65) began taking Aricept after a few years of of declining scores on tests for AD and at the suggestion of his doctor. He had some nauseousness and headaches at first but decided to ride them out for about a week. They diminished. He also takes it in the morning instead of at night so as not to be combined with his trazadone for sleep. He has had a 180 turnabout. He is back to doing complicated math, reading novels, and has even taken up bass guitar and is doing well. He still is forgetful and loses things and gets lost, but there has been a great improvement; almost like he used to be. I don't know how long this will last but it has raised his confidence level 100%. His research team doctor said not to come back for 6 months and to keep on doing whatever it is he is doing.
These drugs are next to useless according to the clinical trials. They might buy you one month in the early stages (up to 6 months) but deterioration continues and nobody knows the effect later as the evaluation criteria of mental testing does not work once the disease takes hold.. If you want to take something take generic Doneprizal. Bought as such it is about $20 per month. Do not ask for Aricept, that is the same, as you pay through the nose.Namenda is still not generic and always a rip-off.
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