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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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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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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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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 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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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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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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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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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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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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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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