When is it no longer beneficial to be taking medication for Dementia?

There is no way to know if the meds are doing anything to make her more comfortable. It is actually documented that there is no research supporting that the meds help. It is common that after a number of years that docs will taper off some of the meds. Sometimes there is a rapid decline following, sometimes there is improvement, sometimes no change at all. At best it is a crap shoot. And the meds are quite costly. You need to evaluate your situation and make decisions which you think are in your mom's best interest, which is also a crap shoot. There is really no way to know one way or the other.

I don't believe either of those medications are prolonging her life at all.

The way to find out if they are helping any is to stop them and see what happens. Stop ONE at a time, so you can judge the effects. If there is no change, then discontinuing the drug seems appropriate. Do this with her doctor's guidance.

We stopped Aricept when my husband went on Hospice care. Amazingly, he was till getting benefit from it, so we added it back in.

Your mom doesn't like taking pills. The pills are expensive. The pills are intended for moderate ALZ. You are wise to question whether it is worth continuing them.

My wife is now in the very severe stage. Since being diagnosed in the severe stage, the Docs have all advised that none of the dementia meds would help her. She is in good physical health, and does take some prescribed meds for various difficult behavior related dementia symptoms. Naturally, none of the usual preventive health meds and supplements are being used. When they were last being used, she would take them out of her mouth and throw them away across the room. She is bedbound now, but lives at home, cared for by a day home health aide, and at night by me. Overall, in my opinion, she still enjoys life. Listening to music is enjoyable for her. During waking hours she sings a lot, the melodies are very good, but the lyrics are non-understandable. Not having to endure the side effects of any dementia meds seems to be a good thing for her.

I'm very surprised she has been taking both these drugs for so long given their side effects. With a DNR in place, it is okay to stop the meds as NOTHING you can do will help this disease. What she once was, she no longer is. The disease has taken hold and will never let go. Live with her in the moment and don't think of her as she once was, love her for who she is NOW.

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

I am - bizarrely - quoting verbatim from the advertisement on this very page for the manufacturers of Namenda.

The question is whether your mother's medications are doing her any good. Doesn't sound likely, does it? I think Jeanne's advice - to halt the drugs in turn, under medical supervision, and review the changes if any after a set period - is exactly right.

Alzheimer's medications only mask symptoms and do *NOT* slow the progression -- be aware taking any kind of psychotropic medication increases the risk of falling.

They stopped the meds when my mother went into hospice. Before that, they seemed to be helping to keep her calm.

My Mom has taken Namenda 5 mg/daily (not Namenda XR and not the 10 mg. dose) since about 2010 when she changed doctors due to moving in with my husband and me in a different state. Before Namenda she was having some fairly violent hallucinations. Her previous Doctor put her on an anti-psychotic. It made her sleep all the time and she still had the hallucinations. 10 mg. Namenda also had disturbing results. But this small dose seems to "click" something back into place, however temporarily. If we skip a day, we will immediately see the confusion, verbal ability, and hallucinations beginning to resurface with a vengeance. Get her back on the 5 mg. daily and she's comfortable, stable, and pretty much free of symptoms other than having no short-term memory and having to search harder for the words she wants as the disease goes on. So for one person at least, this has worked for several years and is still working - not to prolong her life, but certainly to increase her comfort and ours as we live with this awful disease. (Btw, hers is likely frontotemporal or LBS, not Alzheimer's per se -- that may make a difference.)

CCRhea;
Please do not feel guilty about your mom's meds. And, please remember you have done nothing wrong.
My husband has had Alzheimer's for over 10 years. The first 6 years he was on several meds including Namenda. Nothing resulted from these meds. My husband's condition continued to decline. His doctor finally indicated the meds were not doing any good "only making the pharmaceutical companies wealthy." So he was taken off of all Alzheimer meds, but continued his b/p and heart meds. His doctor also mentioned it was his medical experience that perhaps the only Alzheimer patients meds would help is if taken immediately upon detection. If not, it was likened to 'chasing a horse after the gate was left opened.' Sort of like a placebo...take the meds to soothe the caregiver into thinking it would slow or cure the disease of their love one while emptying out their pocketbook. I saw absolutely no change whatsoever after these meds were discontinued. NOTHING. Perhaps it helps someone...there isn't any proof out there (as far as I know) where these drugs are beneficial. The health field readily admits there is no known cause for Alzheimer's---only speculation and theory, so how could they know what slows or improves it! Commonsense, says; they do not. I suggest that labels on bottles are read thoroughly. Disclaimers are printed for a reason that...'there is no evidence the meds prevents or slows the disease...' Duh! Hope my husband's doctor and other medical personnel I have talked to are wrong, however, for my family, it just did not happen. "Hope in a jar" for 6 years was all that was given. Perhaps that is enough for those struggling each day. Sometimes hope is all we have left, however, it does make me bitter at times when I feel those threads of human fragility and weakness are being taken advantage of.
Good luck, God bless you. God bless all caregivers.

Sad and Sorry to say my doctor told us none of the dementia medications work as they are a mask to pacify the family that the patient is getting help. There is currently no medication out that work. My doctor is very straight forward and to the point.

My 97-year old mother who is in the advanced stage of Alzheimer's has been taking Aricept and original Namenda for nearly eight years. The medications helped to stabilize her symptoms during the early years. But I doubt that they are doing anything for her at this point. I am however reluctant to discontinue these drugs because I fear that she could progress more rapidly without them. There's no way to know. That said, you should not feel guilty about discontinuing these drugs. There's no road map for caring for someone afflicted with Alzheimer's Disease. Trust your instincts and feelings and have no regrets.

Have you actually had the person checked for an actual deficiency? Deficiencies cause a wide range of problems, including memory issues. Coconut oil has been discovered to help with these issues and you might find it helpful to try coconut oil

I discontinued the Aricept my husband was on when he entered Hospice. He had been on Namenda as well previously but I did not see any benefit to that given some of the side effects he had.
To tell the truth I doubt the Aricept had done much for him when we discontinued it. I did not see a noticeable decline after he discontinued it.
I also elected to discontinue a Statin he was on to reduce cholesterol.

At some point the medications to "slow the cognitive decline" will no longer work. It is a guessing game as to when the person has reached the point when the medication is no longer doing any good. And do you want to add another or not?.
Nothing will repair the brain and function will not return.
So the BIG question is...Do you slow the decline or allow the decline to continue at possibly a more rapid pace and allow the person to pass more quickly.
And who is to say how fast the decline would have been with or without the medication? Does it really do that much good?
Tough decisions to make and if you are like me your crystal ball is out for repair so you can not see what the future holds.
The only thing that you can go by is ..
What would my loved one want? Would they really want this to be prolonged?
At some point we begin to act selfish in not wanting to let go.
This is a once vibrant, loving person that is now unable to walk, talk, watch their beloved Cubs possibly win the Wo..not gonna say it and jinx it.....
I love this man with all my heart but I know he would not want to live like this.
Ok back on subject.
Follow your heart. Talk to the Doctor or to Hospice and ask them one simple question...."If this were your Mother, Father, Spouse what would you do, if this were you what would YOU want someone to do for you"?

The drug that worries me is Seroquel. It is a powerful anti-psychotic, psychotropic med, & it is used widely with dementia patients to manage their symptoms of agitation and anxiety. My mom, 86, has had dementia for 5 years & is in a residential care facility with 4 other residents. Recently, with her neurologist's support, we tried to slowly reduce & wean her off Seroquel. But it did not work, as her agitation increased. This was hard both on her & on her caregivers. So she is back up to her previous dose of 112.5 MG daily, spread out over the day. I am told this is a fairly low dosage, compared to others. There is no med approved by the FDA to manage the symptoms of elderly Alzheimer's patients. None. And there are no meds to cure this terrible disease or prolong life. Namenda & others may stimulate brain cells for awhile, but the disease wins anyway.

I would talk to her doctor.

My mom is 87 years old with advanced Alzheimer's -- I do not use any medications, and she is very well controlled because I walk her everyday in the park (seven days a week, and if it's too rainy I'll take her to the mall and walk)-- it took a year but I built her endurance she can walk a half mile a day with her walker. That helps prevent falls a GREAT deal, and helps her behavior. I also found giving her green tea daily mixed with strong cocoa drink--about a tablespoon of it a day (I make the tea very concentrated using a little water, and mix the cocoa in there, then dilute with soy milk)--I know it sounds funny but that made a big difference with her behavior. I have to help her with activities of daily living, but she's not bad behavior wise.

Psychotropic meds are dangerous because of the falling issue.

I struggle greatly with these questions. My brother lives in a nursing home, on the "independent" end - and once he entered there, they added two meds to the one I had gotten him down to, for his seizures. His seizures were very rare, and always at times where I could figure out the stress he was facing, and reassure him, so he got calm again.

I have both fear and anger against the current practices of medicating people, especially elders, for as soon as medicine sees frailty, they prescribe a pill for it. I tend to think our bodies are more like vision - some say that glasses ultimately make vision worse, for they make our eyes get used to functioning without the needed struggle which maintains strength and adds versatility. We can solve more if we are careful to use bright light when reading.

I do have a glasses prescription, and had a cataract operation on one eye, which improved a lot, to remove the cloudiness. But I lost my glasses a few months ago, and I do feel that I can manage, though I will find it easier to have the other eye done. And I got a pair of self adjusting glasses lens for each eye separately and those help for fine tuning tasks. So maybe the artificial assistance is good for short stress or needs, but ongoing is overdoing.

Yet in the complex, medicine-run residences, I feel like medications become the go-to solution, which patients don't need anywhere near the amount they receive, and the meds have the unappreciated side effect of remove the need for others to problem solve around how to work together to handle people better - learn to have short times of involvement, trade off staff if a crisis starts, train staff to notice how each individual thinks and to work to be alert to how they move best, and then, set them up to do so on their own, not do everything for them.

I know seizure meds differ some from Alzheimer meds, but all mood calming ones seem way over-used to me: since being there he has gained 40 lbs, and so he has a new diagnosis added: obesity. This one makes his life and ongoing movement, more difficult.

I was not able to continue to help him across the miles, so I agreed that he needed round the clock care and oversight, but I believe I could have done it better - if I was willing to make my life revolve around his care, which I was always advised not to do, and I would never want to be the Only person helping him. It is just a challenge that takes years, to see how to work positively with others in giving care!

I just visited him on the holiday, and we did two activities - brought another resident out with my brother, and the 3 of us sat out on a deck at a restaurant overlooking the river, for over 2 hours. Quiet, simple. Enough excitement for both of them. Helped them feel more able. My brother struggles to walk on his own, despite bal

Touching heartfelt response from Grandma1954. I will carry your words in my heart. Thanks to you and everyone on this forum.

Stopping depends on the patients status. In the first place, namenda and aricept working together were slightly effective in the early stages as a hope to all but actually in the long run were ineffective. If she can swallow I would continue aricept alone until they suggest morphine. This illness is a curse with no hope in sight for remission.

Thank you CCRhea for the question as I feel many of us wonder this. I stopped my Mom's Exelon patch 2, maybe 3 times and vowed to never do that again. I felt she couldn't possibly be more confused but it still benefits her and those with her. I wrote the response from ferris1 on a sticky note to engrave on my heart. The collective wisdom here is such a gift.

My husband took Namenda for 3.5 years. The doctor took him off of it August 2015 because he had side effects of being overly sleepy and urine retention. He did quit talking a few days later and was less responsive to his surroundings. We tried smaller doses, but the side effects outweighed the benefits in his case.

I feel for you. I agree with the person who suggested taking her off one at a time. Namenda made my mom worse, she's currently on Arricept, and I am wondering if it's helping her.

The medication is not a cure, it is only intended to slow it down. With dementia alot of things are associated with that and one of those things is the immune system. The more the disease progresses, the weaker the immune system becomes. So it is really never a good thing to take her off the medication. My father is going the same thing right now. Make sure she always gets her medication.

I think that the medication should absolutely be stopped in the latest stages when the person is unresponsive and subject to infections and bed sores. That is the part of my life I would be glad to do without.

But as many have said, there is little evidence that these drugs help and no evidence that they help a lot. Stop them one at a time, to see if she is a lucky one who benefits. Do not feel guilty if you decide to stop a medication which does her NO GOOD AT ALL.

llpetsitter
Namenda and Aricept our a take as a combination. Neither will reverse AD but from a frame of mind point of view try aricept alone. No guarantee of hope but the patient if cognizant might feel that he is getting some help i Physiological approach.

CCRhea: You should ask her doctor first and foremost. Do not self medicate.

Gravi: You have to be very cautious with sleep medications. And why? Because they can hook you!

My father has been on galantamine for 4 years and namenda for 1 year..His psychiatrist's opinion is that taking off the meds would create a worse decline (even though we don't see any benefit). His geriatrician agreed with this. Also we have not had negative side effects; that would have to be evaluated by his physician...

My dad was on Respiradal/Zoxadon the generic AND Alzam. In less than 10 months he went from fully functional with early dementia to being in a wheel chair and no-conversation. The side-effects of this med is so bad, I cannot understand why it is on the market, starting with the stiffening of muscles to brain damage. I kept saying it to his doctor, but the Home wanted it. He sang a lot beautifully, whilst in pain, and remembered every word of every song and I have loads of regrets about not stopping the meds, after I had researched its side-effects. He passed away 3 weeks ago, and if I could have changed anything, I would have never let him take those tablets. Once advanced, it serves no purpose, in my view.