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NancysDaughter Asked August 2016

How should the Namenda XR help my mother with Alzheimer's? Should I keep her on it?

I have put my mother on the Namenda XR twice but in both instances I feel like it has had a negative impact. She seems more out of it and more forgetful. What are some positive differences you have seen in your loved one when placed on it? Have you ever felt like it has had a negative impact? My mother is compulsive about cleaning and is very active for 81 years old. She was diagnosed a year ago. Should I keep her on it?

Llamalover47 Aug 2016
I am not a medical professional, but common sense has me asking a question=Is it possible that once the Alzheimer's patient is on Namenda Extended Release for so long that IT WILL NOT WORK, e.g. their bodies have become so used to it that it then stops working. IDK.

Llamalover47 Aug 2016
See the info below. I am not up to speed on Namenda XR. Here is partially what their site says-------


There is no evidence that NAMENDA XR prevents or slows the underlying disease process in patients with Alzheimer's disease.

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Sunflo Aug 2016
My mom was placed on combo Namenda and Aricept; it didn't help and she said she felt "fuzzy". She stayed on it for 3 months, thinking once her system stabilized it would help. In my opinion -- made her worse. SHe stopped taking that along with some other welbutrin, zoloft, etc. and I can attest that she actually got sharper. I know that doesn't happen with everyone but in my opinion elders are over medicated or mis-medicated as drs continually refill prescriptions without seeing patient or adjusting for weight changes, etc.

My FIL was pretty far out of it and yet they kept putting those memory patches on him everydayy -- what a waste...he didn't improve and no, it didn't stablize him; he just checked out and was really not comprehending or talkative, etc.

I believe it may help depending on the stage of dementia and age of person when they start taking it. You'll have to be the judge for your mom; but if she is not doing the things she loves (cleaning, active, etc.) and she is fuzzy; then I would discuss with dr. or discontinue and see if she goes back to her old self. You have to balance the benefit. Do you want them to remember more or be active, happy, social and a little forgetful?....

tallpetsitter Aug 2016
Namenda was a nightmare for my mother. She had more difficulty walking, and became agitated much more easily. We took her off it after a few months, and her walking and demeanor improved immensely

JoAnn29 Aug 2016
Like anything else, its the person. What works for one may not for another. If she doesn't do well on this med, take her off. She may do better with another.

Bobbi2020 Aug 2016
My husband has Parkinson's with dementia and was getting very angry and pushy. We started him on Numenda and it has helped immensely. Different for everyone.

Luv2Travel Aug 2016
Mom is 85 and been on Namenda for a year. Has had no noticeable impact and I also wonder if it's worth continuing. Excelon patch and seroquel, on the other hand, make a huge difference. She's been on those 2.5 years.

VJFriesen6939 Aug 2016
Remember that the doctors cannot tell how any one person will respond. Remember also they are practicing medicine. That is not a put down because I have worked in the hospital for years and know that most of them do their best. My wife has vascular dementia and is on Namenda XR, the last time we asked our neurologist she stated it was best to continue taking Namenda. The doctor gave us samples. When we see other physicians in town and she gives me some each time. Thanks to Dr. Edwards!! Our staff has had experience with taking someone off of Namenda and they don't gain back the ground that they lost. This was a doctor's wife who was taken off at his request. It is a very difficult disease and a cure is not even on the horizon from what I am reading and I read a lot about it because of my background as an RN. My wife stays in Assisted Living Facility and about 50% of the time she is fairly well. But, who knows how she will react when I get there next time. As a caregiver for years it was more than I could take care of and the professionals I asked stated that if I didn't take care of myself I would be the one in medical trouble. She wants me to outlive her. Of what help could I be if I was sickly or at least got ill?

NancysDaughter Aug 2016
I appreciate all of your responses regarding Namenda. I was so frustrated trying to figure out if I was imagining her being worse on it. My husband convinced me that I wasn't along with her responses. I weaned my mother off over a two week period and she has now been off of it for a week and is better - more engaged and more active. My mother has always been young for her age and very active and proud of how much she gets accomplished in a day! I have twin 4 year olds and an 11 year old and she just loves cleaning my house and pulling weeds (sometimes they're my flowers and not weeds) but that's okay. It's been a year since her diagnosis and I have gradually had to take things away from her (most recent her license); last year - paying her bills, managing her meds, grocery shopping, etc. She says things to me like "at least I can still take care of myself." I just smile. She is not aware of her diagnosis and I don't think she would believe me anyway. We got all of the financial stuff out of the way last summer after she was diagnosed. I have her with me about 75 percent of the time - taking her back home for short stays. We are in the process of putting surveillance cameras in her place. She doesn't go anywhere except on her porch.. She lives in a gated community and her neighbors are aware of her disease. You wouldn't know she had Alz unless you really spent some time talking to her so I'm trying to give her some independence as long as possible. I still feel in my heart that not telling her about this disease is the right thing to do.

EMASund Aug 2016
My mother had a negative reaction to Namenda, she reported feeling "like I'm floating." I discontinued it and she didn't report the "floating" again. She was 94 at that time, now 95 with temporal lobe dementia.

Jazzy2 Aug 2016
I've tried my 80 year old husband on all of it with negative effects from all. Now we've taken him off of all but his Parkinson's meds and I honestly cannot tell a difference. The namenda did seem to make things worse but who knows. It could have just been the progression of this horrible disease. Now, I just try to keep him as comfortable and calm as possible and let nature and God take its course.

lovesdad Aug 2016
Do not take her off! I took my dad off and in 3 days he couldnt talk or eat and stopped walking. He oassed away 3 months later. I will never forgive his doctor who took him off. Dont do it!

mmthku Aug 2016
In the last line, for "her" I meant "you."

mmthku Aug 2016
I took my wife,76, off Namenda for a week, and she got noticeably forgetful and a little more scared, forgetful, and paranoid. With our doctor's agreement, I started her back up, and the improvement was notable. She is also taking Donepezil. Every person has a different reaction to these drugs, None cure Alzheimer's--they just slow its progress down. Physical activity helps--try to get her to work in a warm pool with her. Many physical therapy companies have one.

anonymous167756 Aug 2016
You have to watch the dosages. They make a big difference. My mom was on Aricept and was ok until we upped the dosage then she because mean. We dropped it back down and added Namenda and she was her happy self again. Maybe ask the doctor about a lower dose.

akdaughter Aug 2016
My mother started taking Namenda (first the twice daily dose and then the XR) about seven years ago. Four years ago I asked her PCP about stopping it after reading that it is effective for only a couple of years at best. He told me that if she declined after stopping the Namenda she would never regain what she lost. She continued her gradual decline, and then last fall became increasingly agitated and angry. I read that Namenda can cause agitation in some people and again asked about stopping it. After a move from assisted living to a memory care wing and a change in PCP, the Namenda was discontinued in February. She still takes Donepezil (generic Aricept) and she also started taking Seroquel and Lorazepam to calm her at about the same time. Now six months later she is more calm and I cannot see any significant change in her memory or cognitive skills. Like homecargiver's wife, she is alert and responsive to her surroundings and can carry on a conversation, but remembers nothing and has no executive function. In my opinion, Namenda had little or no effect on the progression of her Alzheimer's, but had a huge effect on her bank balance. I wish it had been stopped much sooner.

homecaregiver Aug 2016
My dear wife has been on Namenda for eight years now and I must say that this medication along with the Exelon patch she has been on has been very helpful to her and the family. She is still very alert and responsive to her surroundings. We will continue with the medication as long as we and her doctor cocnur.

DoingbestIcan Aug 2016
Sorry that was supposed to say "It neither helped nor hurt." Asfor me, I hope "I" helped. Perhaps, my making them take those useless, expensive drugs did hurt. We'll never know.

DoingbestIcan Aug 2016
CindyCBlair stated my feelings exactly. As for Namenda, both by parents were on it , evenutally. I neither helped nor hurt , as far as I could tell. Perhaps it slowed their decline, but how on earth can you tell that with a disease that has such a variable progression. And for what? So we could all have more years of that misery ? All I know for sure is that it cost a lot of their money to keep taking it. If I had it to do over, I would probably not waste the money.

ohiogirl1 Aug 2016
We just recently took my mom off Namenda after about 5 years of being on it. She is an active, physically healthy 85 year old, and had lost almost 30 pounds in the last year. Immediately, after weaning off over a week with half dosages, she started getting her appetite back, was no longer angry and defiant when giving her showers, showed some clarity in her speech and was again able to engage in meaningful conversations in asking people about themselves.

Isabelsdaughter Aug 2016
I agree with Cindy. They put my Mother on Namenda, and she turned into a zombie. It sucked the life out of her.

CindyCBlair Aug 2016
This is my opinion, both my parents had Alzhiemers. Namenda stopped working, all it did was prolong it. My parents were proud people and if they new some of the things they did or how they acted. They wouldn't want it. I would not put them in it. Yes i had my parents longer,,they weren't my parents anymore. This illnesses destroys the patient and loved ones. I would talk to the doctor. God Bless

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