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Mom has dementia and was diagnosed 2 years ago. She refused any meds but now I am making her decisions (healthcare proxy) and her new MD wants her try this. She is 86 and is not miserable or in anguish over her loss of memory. She has 24/7 care and we are not looking for cures (there aren't any). Is there an advantage to her taking these meds? Her biggest issues are not always sleeping well -thinking its morning at 2 am and she tries to kick out all the caregivers 1 or twice a week but that passing if they go in another room for a while. Just wan some of your input. Thanks.

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My mom has been on Aricept/Donepozil for 5 years or so and 4 weeks ago we finally added Namenda, when it seemed it was the right time to do so..... I swear, she's so much worse in the past 3-4 weeks, almost exactly when we began the Namenda. She's a creature of habit, always got dressed in the mornings and fixed her face (put on her eye/lip makeup, did her hair, etc...) That was a huge part of her routine/identity--how she wanted to present herself. Now it's like she doesn't think about it at all, or just doesn't care. It may be part of the natural progression of things, but it just seems so odd that something so important to her could not matter to her at all anymore, and that that change happened as she began the new medication. Anyone else seen a marked negative impact from the drug Namenda?
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It's funny how different so many people react to the same medication. As I stated earlier, after 4 years, I took Mom off Aricept. Her dementia was worsening and the ongoing side effects from the medication made me decide to take her off Aricept. At this point, I think quality of life is more important. I don't know if her condition is worsening because I stopped the medication, as she was notably declining shortly before stopping Aricept. She is no longer suffering the horrid side effects that made her miserable. To me that is a major improvement. This terrible disease will ultimately win the battle. IMO, I'd rather it take her earlier, with less discomfort, than later while experiencing side effects that keep her agitated. I do think it's wonderful that some have found a medication that works.
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my mother was put on Zoloft...improved significantly but definitely still had problems with the sundowners...then we started on Aracept and Nemanda. She is way better....she is present, seems happy...knows everyone, took her out Saturday and for the first time in over a year, ASKED to stop at a restaurant to eat...then actually ate! She woke up this morning, smiling and saying "I am actually HUNGRY this morning!". and wanting to go work in the yard...so yeah, I think the meds are helping a lot...four weeks ago, she didn't know me and just sat swaying with her hands on her head...
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My mom has been taking Namenda and Aricept in combination for over five years. Her condition stabilized during the first 2-3 years of use. Then her symptoms began to gradually worsen. I have nevertheless kept her on these drugs thinking that she might progress more rapidly without them. I have no experience with Namenda XR. But I will starting giving it my mom when Forest Labs discontinues the sale of original Namenda this August. This medication is unlikely to address your parent's sleeping issues. I suggest you discuss this with a competent neurologist or geriatric psychiatrist specializing in the treatment of Alzheimer's Disease. They may be able to prescribe something that addresses the issue. All the best to you.
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My 86-yr-old mother has been taking Namenda XR since December. The cost is exorbitant but we have seen good results to her quality of life. Unfortunately it also restored some of her 'bad' behaviors because she was once again able to dial the phone and alarm her friends that my brother and I are "trying to put her somewhere, make all believe she is crazy, and control her life." LOL The short version is that she started bathing again without a scene, grooming better, reading, going back to church after 9 months of not, chatting more lucidly with her friends, helping out in the kitchen, remembering and singing other songs than the single one she had sung REPEATEDLY every day for 9-10 months, being able to track better in conversations, a slight improvement in her hair-trigger temper--meaning she can now be distracted or talked down off the anger ledge more easily than without the Namenda. (Or perhaps we are just getting better at dealing with it ; ) ). The flip side is her re-found ability to give money away to Publishers Clearing House and other snail mail scammers, her OCD/hoarding tendencies to reorganize/hide things thereby losing them in the void of her condo, her ability to appear totally lucid and reasonable (an illusion) to those who spend little time with her. So you see the list of advantages IS longer but we know this will not last forever. It slightly improved but did NOT CHANGE the absence of short term memory which has seemed to start worsening again in the last few weeks. She has been tested by a psychologist and a psychiatrist (who upped her Namenda to the max) but no one has formally given her a dementia diagnosis. She never lost her paranoia though became somewhat better able to not express it to everyone so vehemently. As other posters have said, each patient will respond differently to the medication. It is a fine line between improvement and harm in their later years considering financial cost and difficulty at defining "quality" of life. Yes, big Pharma may have profit in mind but only we can make the difficult decision of whether they also are providing 'help' to our loved one. Also be mindful of the idea that once you start it, perceived improvement by others may put you at risk of being accused of neglect if you decide to then stop it, esp. by hired caregivers who seem to think they know best. Prayers and best wishes as you traverse these uncharted waters. Many of us share your dilemma.
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My mom had been on the patch an namenda for years now. She started refusing the patch and if anything she improved. She is not so argumentative and paranoid. I can't see that these drugs do much to help or it may depend on the patient's status. The anti-psychotics seem to help more regarding quality of life.
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My mom was on Aricept for 4 years. Throughout most of that time, she suffered horrible side effects. A couple of months ago I decided to take her off Aricept because her Alzheimer's was getting worse and the side effects were also getting worse. Since I took her off the drug, she doesn't have the horrible uncontrollable diarrhea, nightmares and leg cramps. She's actually less agitated and sleeps better. I read recently that a new study found about 10% of people who take Aricept actually see any benefit from it. The other studies I have read, stated about 20-25% realize any benefit. I don't know how it can be determined if there is any benefits. I can't help but suspect that the big pharma companies need to recoup the millions spent on R&D.
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My Mom was on Namenda and Excelon patch for 4 yrs. after a diadnosis of dimensia. Her condition got SLOWLY worse over those 4 years, but certainly, she was able to enjoy visiting with family, going on outings etc. Towards the end of the 4th year we began to notice that she was becoming VERY agitated and angry After each dose of Namenda, the Doctor then reccomended that we stop it because the side effects were greater than the benefit. Once we stopped the drug, my Mom went downhill FAST.Even though I know it was the right decision for her (she is no longer angry and is more content, though her cognitive abilities are VERY poor) This shows me how much the Namenda was slowing the progression of the disease. The problem is, you will not know it unless you stop the drug and see a great downfall, and then it is too late, the drug cannot reverse symptoms if you were to start it again.
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I started Mom on Namenda Monday. I posted twice on here, over the weekend and got very little feed back. Had I gotten these responses, I don't think I would have. I guess timing is everything.
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mrn4eva, my mother's doctor I think said that it could help with her concentration, with is part of what you're talking about. In my mom's case, her problem was not one that would be helped by Namenda and she discontinued it, but am passing that bit about concentration along to you.

One of the answers in here seemed to indicate that Namenda is for people close to the end of life and I doubt that is true. My mother was nowhere close nor are others I hear that have had it prescribed.
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My mother was on Namenda in '07 that drug had made her craizer than the az ever did. After we quit giving it to her, she calmed down. I believe she'd been dead if we had continued those meds. She's bed ridden now because of a stroke. It's very difficult to care for her as she is dead weight. We cannot afford nh at 6k per month. I am hurting all the time in my back, wrists and i cant get enough sleep i cant do much of anything
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The neurologist recommended Namada and Exelon for my husband and after 2 years, told my husband he wouldn't have been able to enjoy life then if he hadn't been taking them. YOu can't see nay change but apparently it slows things down a bit. He was on them for years and toward the end I had him taken off them. At that point I couldn't see any reason to continue. good luck
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Well, our experience is a little difference, but so is the timing of taking the drugs. My Dad was diagnosed with dementia over 8 years ago, and for all but the past year, he was on Aricept and then added Namenda as his memory worsened. His neurologist said, it would slow down the progress....and it seemed to until about 2 years ago, when Dad got markedly worse...couldn't pay their bills, and memory started getting really short...mixed up days and night, couldn't use the remote control anymore....and some behaviors started with him. But...once he was placed in a facility and was under care of a geriatric psychiatrist, YES....they wanted to stop all the drugs, and watch his behaviors and add other drugs as needed. He did not get worse...but he did need to add something to help him not wander at night and resperidol to keep him from being agitated at times. He still recognizes family; cannot always put a name with a face....for example, last February, his favorite great granddaughter, Haley, (named after him, and born on his birthday) flew from WA state to spend their BDs together. He had not seen her in person for over a year. She came in to visit him and said, "Papa....do you know who I am?" He looked and looked at her, and responded, " I know you are special and you belong to me!" But as soon as she told him her name, he got it all connected really fast....He cannot carry on much of a conversation unless one gets him talking about really old time memories....then he can on for an hour telling story after story. I am glad he was on the drugs for his early dementia, but agree, that at a certain point, what is the point? And especially if other drugs are also needed, because you are just asking for more and more chance of side effects from too many of them. Figuring out how to create short term quality of life, and find things to converse about when there are moments of more lucidity, appears to be the most important goals....and just letting them all the time that they are loved, loved, loved!
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My mom's been on the Namenda XR for few weeks now. I see no difference from the Namenda 10 mg twice a day she was on for the past few years other than the ridiculous expense (I believe it was $365 for 90 days with her insurance but don't quote me). Now the neurologist says Aricept will be/may already be out at a higher dose, also will be expensive, but mom's been on the generic for that for a few years and we won't be changing that one. We've never been offered the Exelon patch, and I doubt mom would have sense enough to keep it on anyway. My sister tells me the first thing the gerontologist does at the high-end memory care place where she works is to cold turkey all the new residents from their meds and go from there. I'd frankly love to take mom off most everything but her blood pressure pill, and she'd like that also, but don't dare to at this point. Thank God she has decent insurance is all I can say.
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We got the Namenda for my dad when his anxiety and obsessions got to be uncomfortable for him and us. It helped him immediately! Each person is different. For us having him more comfortable and happier was worth it. Nothing is going to cure them (as you said), so I think its best to just try to make them happier and calmer. On that note, we have now had to get Seraquel (?) PRn for his compulsions
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Your answers are honest and heartfelt-I appreciate the input. I am only trying the meds for her. The MD said it sometimes helps the frustration they feel not remembering or recognizing things they should. I am completely at peace with the course of this disease. I treasure every moment we have and we always have a pretty good time together. I think she looks into my eyes and knows I'm someone she loves. I also know about pharmaceutical companies and don't plan on giving them any more than I have to. God Bless you all -I will keep you posted.
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I have to ask here - as I do my Mother's own doctor at times - at what cost are medicating our elders? I mean - yes we need to do something about behavioral issues and sleep issues for their safety and the safety of their carefivers, but if we are medicating our elders to slow the "downward spiral" - at what cost to them are we doing this? Is their quality of life going to improve? The demetia will not improve so if we lengthen their time here - are we doing this for us or for them? My own Mother is progressing quickly. Luckily we had this conversation before she was to far into the process of decline to make any decisions. She stated adamantly that she did not want this process slowed down. She knew at that time that it would be a matter of quality of life and the inability to care for herself. So I must ask again - who are we prolonging life for - them or us? Yes I would love to have more time with her but at this point she no longer remembers who I am or that she has a daughter... Best wishes with whatever decision you choose to make.
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up until December 2013, I refused Alzheimer's recommended drugs for my husband who is 83, because of all the reasons those have listed above, my thought was to go along with his decline & learn to adjust, in October He spiraled out of control and his meds were titrated after spending Oct Nov Dec in hospitals I was told he would never come back home and needed to be institutionalized. The last doctor, a physiatrist finally listened to me as a caregiver and worked diligently to get him to the point where I could bring him home, I then agreed to allow the Namenda & Exalon Patch, from day one home ( Dec17) he was good, it is now over four months, and I could not ask for anything more, for us it seems to work, I think! I don't know but he went from the bottom of the barrel to how he was before he started getting way too much to handle. I don't know how long this will last, I'm one that is always "waiting for the other shoe to fall" but I take each day as it comes & have learned the hard way that taking care of me means he gets the best care I can give. I know these meds are great money makers and for the most part do nothing, especially in the oldest of Alzheimer's patients, but we have nothing else, no one thought to nip this horrible disease in the bud a long long time before now, but all those now between 45 & 60 are scared to death the next case will be them!
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My Dad was put on Namenda when he was diagnosed with Alzheimer's two and a half years ago. It made him nauseous, exhausted, etc. Ultimately we sat down with Mom and Dad and had a frank discussion about quality versus quantity of life. Since the Namenda is not a cure, my Dad decided that he'd rather get off the meds and enjoy the things he'd always enjoyed as opposed to laying in bed sick. I've recently noticed that he is starting to fail and started second guessing our part in his decision to abandon the meds. In two and a half years he's had good days and bad, luckily more good than bad so that brings some comfort that we did the right thing. Good luck on your decision and always treasure the time you have with Mom.
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I think that the only reason to take these medications is to make the drug companys very, very rich.
Here is the story:
Mom about to turn 90 in Novemeber of 2014. She has dementia, not sure what to do with a tooth brush anymore or how to use the micro-wave...I could go on but know that you guys get the idea.
Well, we live in New Jersey and there was a lot of snow. She was on all types of medicines for a long time, sleeping pills, high blood pressure, sugar , high colestrol, last few monthes on Arcept and about to go on Namenda.(Please excuse spelling) . Because of snow I told my Father ( also 89) to pick up the blood pressure medicine because it was low and I wanted to make sure that we had enough of it just in case we could not get to the drug store because of the snow. He picks up the medicine and reads the bottle. Says take 2 a day. He starts to give her 2 blood pressure bills out of the bottle plus the two that were already in the pill box that I fix every week, usually I fix two or three weeks supply of pills so to cover her if I get sick and can not do it. Well she got a double dose of blood pressure medicines for about 2 days before we caught up with what Dad was doing. Needless to say that her blood pressure dropped so low she passed out and hit her head on dresser and was bleeding for the head hit. Dad did not notice her down because he was too busy watching TV. We called the Visiting Doctor and Nurse sevice who came right away and they decided to take Mom off All medicines because they were afraid that Dad would do the same thing again.
Well, the long and the short of the story is that after she was off medicines for two weeks they took all vital sign and found out that nothing has changed. So she is not getting better or worse. Wait, something is different-when you speak to her on the phone now she now knows how to use her words and makes sense when she speaks. So now she has not been taking anything except vitamins. She cannot over dose on them. Been off meds all of Jan, Feb, March and almost April 2014. She still does not know how to cook or do anything but she doesn't sound like she is out of it as she did before.
Answer to question: drug companys will go out of bussiness if they advertised that their drugs did nothing.
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I have strong feelings about this so take it with a grain of salt. My Dad's doctor put him on Namenda a number of years ago. It became obvious pretty quickly that the doctor did not believe the namenda would make a difference. When I pushed him on why we should continue especially given the high cost of the drug, the doctor gave Dad a couple of months worth of free samples.

When the memory loss continued, the doctor added Aricept with the Namenda. Can you see a pattern here? At some point, we moved to the generic for Aricept with no problem. Now, it appears that the patent on namenda may be nearing its end so what is the answer? Create a "new" Namenda XR that can be patented to keep the price high. This drug puts Dad in the donut hole by August each year.

When we moved Dad close to us 18 months ago, I asked his new internist about namenda. The doctor said, "the drug companies have you in a tough spot. These drugs MIGHT have a slight affect for some people, but you don't know. Is it slowing the rate of memory loss? you can never tell." So people keep taking Namenda often because (family members) don't want to feel guilty because maybe...

If I had it to do again, I would not use Namenda. If your Mom is not bothered by her memory loss, then let her be. By the way, Dad is getting less patient with care givers as of the last month or two. The Namenda will not fix that challenge. Forgetting that he was kicking them out an hour before is a benefit of dementia. We laugh about it. If Dad is mad at me, it's ok. He will forget.

The more comfortable I become with accepting Dad's dementia, the better I can focus on his day-to-day quality of life. What he cares about is being happy in the moment. He loves to garden and so we buy him lots of flowers to plant and don't fuss when he transplants dandelions.
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My mother takes Namenda XR. She has taken the Namenda now for over a year, and a few months ago, we saw a neurologist who amended it to the Namenda XR which I think is extended release. Now, I want to say to twopupsmom that my mom is taking the Exelon patch IN CONCURRENCE with her Namenda pills. Her neurologist explained the patch and the pill like this: "The Namenda is lobster. The Exelon patch is the butter. They are ok separate but together they work much better!"

Mom has been on both the "new" Namenda and the patch together now for a couple of months. I have not seen a change. But maybe it will take more time. Or, since dementia cannot be reversed, maybe it is just keeping her from failing more quickly. She seems the same as she was a couple of months ago. I don't think we can expect to see improvements from any of these drugs with their memory though. That's shot. I think these drugs are just an attempt to stop the downward spiral.
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I agree with Pam she needs to be on some meds, verbally abusive to caregivers and the sleep issue call for it. Most meds can be crushed and added to apple sauce so she won't know she's taking "pills" but Namenda XR is a capsule (currently mu husband takes the Namenda tablet 10mg twice a day) but that is changing to the XR also as the Pharma will no longer make the tabs after August. Namenda is used to try to keep the person taking it from moving to the next stage too quickly, as is the Exalon Patch.
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My dad takes Aricept and I noticed no difference at all in his dementia. He's been on it for almost a year and his dementia has steadily progressed. Would it have progressed faster without the drug? There's no way to know. What we do know is that dementia gets worse whether you're on drugs or not, so why take on the side effects of the drug. We're deciding whether to talk with his doctor about discontinuing it (along with a couple of other drugs he's on).

Like your mom, my dad is not particularly bothered by his cognitive problems, he seems to accept them, sometimes saying he "can't remember things like he used to" (that's the least of it, but it's the only aspect he talks about). If he was agitated or depressed, I'd be on board with looking for drugs to improve his quality of life, but he's not.

I suspect the drug won't help much with sleeping. If she awakes (just because old people do), she will still be likely to be confused about the time of day.

I think doctors just like to be able to offer something to patients with dementia. It's a hopeless condition and probably makes them feel helpless. Personally, I think wishful thinking is the explanation for the improvement some patients report with dementia drugs. Or, a patient not wanting to disappoint a doctor they like and respect. "Sure, Doc, feeling a little better..."

Something to keep in mind is, once you're on more than three drugs, the conflicting of side effects can potentially outweigh the benefit of the drugs, especially for someone with a terminal condition.
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Her problems are greater than just insomnia if they prescribed Namenda XR. All patients are different, if they are on other medications there can be interactions or side effects. Go to the website: Namenda.
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