I've gotten mixed messages about Aricept. Some of our docs have said it may not help, but more recently the psychiatrist said that it clearly slows the decline. I seem to remember that a year ago it wasn't recommended during the final stage, but it's now recommended for all stages.

What are others hearing? Has anyone decided to discontinue it & if so, what happened?

Some replies I have gotten when asking others this question:


I have actually read a newstory that quoted a research study that indicated Aricept helped even late stage AD by increasing performance such as toiletting, etc. My Mom has bee on it for about a half year now and she is moderate AD and even though the disease is progressing she does much better on it than off it.

We tried aricept with my mom in stage 6 but she had a horrible time with it so we stopped it.
She complained that her head hurt so bad and that her head was "detached" from her body...
Lots of paranoia.....
She is entering stage 7 now and is on Xanax and Risperdal. Had a bad reaction to Ativan so we dropped that....
Hope this helps you some....


I am like Zebes mom's dr. said they never take the patient off Aricept or Namenda and she is end stage AD he said then I ask was it stage 6/7 he said they call the stages Mild, Moderate Severe. This is very confusing to me as well. Why does it seem like everyone of the dr. uses different ways of referring to stages and have such differences on wether to continue meds in late stage or not I don't understand. I have been told Aricept is still helpful in the severe stage.

My Mom is in the 6/7 stage. Her Dr. says that he is not sure that the aircept is doing anything, but that it can't hurt anything either. My stepfather seems to think that the meds help her sleep, so we are going to continue using them.

Aricept is approved for severe Alzheimer's. There are at least two studies. One is a Japanese study and the other I think is Swedish. Both dealt with patients with MMSE scores between 1 and 10. A different measurement was used for testing results. There was better than statistical error improvement compared to placebo. But we are discontinuing Aricept here.

Aricept has an estimated effective period of 18 months to 2 years, and even it's manufacturer states that it's purpose is to treat early to moderate AD. That doesn't mean that all doctors believe that it can't be effective in late stage AD, but there doesn't seem to be any info that I can find that supports that theory. However... ya never know...

My mom's stage six, and they just put her on aricept. She'd been on razadyne, and she had been declining so rapidly these past couple of months that they felt it was no longer working. They told me aricept was marketed for mid to severe stages. This is all SO confusing.

Aricept is usually used for mild to moderate AD. I don't think it is effective in the later stages.

My husband is entering stage 7 and is still taking aricept. The neurologist said he didn't know if it was doing any good now but it wasn't hurting anything so why take the chance of stopping it?

Hi, my first post.

I chose to discontinue Aricept with my mother after a month or so because she simply couldn't tolerate the medication. She was having severe side effects like paranoia, obsessive behavior, agitation, sleeplessness, etc. She was miserable, as were those of us who were caring for her!

When I discontinued the Aricept and asked the doctor to prescribe a mild anti-anxiety med, her mood leveled out.

Paper Doll- Was your mother also taking any antipsychotic medications such as seroquel? My grandmother is also exhibiting some of the common symptoms that your mother had experienced, but her neurologist said that these were common symptoms of AD, and that they were easily treated with seroquel. So far the paranoia, agitation and sleeplessness are still there. I am wondering if they are worsened by her aricept use. I am trying to convince my grandfather to take her off of seroquel because of the harmful diabetes causing effects it has been known to have on AD patients.

My experience with this in mom was a big zero and she's still on it along with Namenda (another big zero). She has declined steadily. She started Aricept in March, Namenda in July. I would like to take her off them but my brother is terrified that she'll decline more rapidly. Neurologist says it's up to us.

I seriously doubt the effects of AD drugs. However I am no expert. Where I take issue is in the final stages. Why would anyone want to prolong these stages? Think about it,especially with the last stage. Why would any doctor consider it good to keep someone in a state this horrible?

Good morning.
My Daddy isn't on Aracept, but has been on Razadyne since
2001 and Namenda, in addition, that last few years.
In both cases, I definitely noticed his decline seemed to slow
down, and in the case of Razadyne, he really seemed to
plateau off for a good year or so.
I remember his neurologist telling me at the time he
prescribed the Razadyne, however, that Daddy would have
to take it the rest of his life or else when he stopped he would
plummet to the level of funcion that he would have been had
he never taken the Razadyne.
Don't know if that still is the "expert" opinion out there--so
much changes so fast, and we no longer see that particular
neurologist.
Oh well, just adding my 2 cents.
Have a great day, everyone!
Carol

That's what gets me, the literature and the doctors will say "if they come off, that's the end...they rapidly decline, blah blah" I think she has had a rapid decline (my guess is because she was affected in her early 60s and I think it's more aggressive when it's early) and her decline would be the same with or without these drugs. Just my 2 cents.

That's what keeps my brother wanting her on them. He is afraid if she stops them she'll be bedridden a day later.

Aricept seemed to really help my dad in 2001 but we began withdrawing it in 2007 when we entered hospice. They had me kind of go in reverse of when we started. So I cut the dosage in half using a pill cutter and it took 60 days to stop. They warned me not to stop abruptly.

This is a big question in my mind these days. Mom started on Aricept at her initial diagnosis in 1999. Somewhere around 2001 or 2002, they switched her to Exelon when it became available in the USA. Shortly after they added Namenda. She has been on both of these meds since coming to live with me in late 2005 (then a late stage 4/early stage 5). I remember my dad singing the praises of Exelon when Mom started on it. He swore it slowed her progression.

Fast forward to present day - with my mom firmly planted in Stage 6, I am really debating whether or not I want to prolong this. I have seen how people are in the final stages and I don't want that to go on forever with my mom. She is a very proud woman and I know she is aware of her shortcomings - prolonging it would be the worst for her. I have asked the neuro his opinion and all he tells me to do is switch to the Exelon patch. Not the advice I was seeking. He's a bozo and that is another post entirely.

I did ask our hospice nurse and she inquired with our GP. This is a doctor I like very much, but his AD experience is somewhat limited. Afterall, he is a GP not an AD specialist. He said he would leave her on the meds in case they actually were helping to keep her stable. The problem though is that there is no way to really know.

I hate having to make these decisions.

Dear Betsy,
Flinty's suggestion of gradually reducing the med(s)
sure makes sense. Maybe the doctor you like will
be willing to help monitor that process...
I agree, though, it does stink having to make these
kinds of decisions. Who would have ever thought...
Good Luck!
Carol

Firefly I haven't read all of the other responses, but I had the same question about Aricept and Namenda for that matter in regards to my BF's Mom (BFM).

As soon as we got the DX that she indeed had ALZ they put her on both (she was in the middle stages by that point).

After she progressed some more I wondered if the Aricept was really doing any good. I was worried that if we did take her off of it then that would speed the deline up even more. We didn't want that, but if it wasn't really doing any good in slowing down the process why keep giving her something that she doesn't need. Right?

So I had a good old heart to heart with her PCP and I asked him point blank if this were your Mom and she was in the condition that BFM is in would you suggest keeping her on it.. He was honest and said no if she was still declining at what seemed like a rapid rate then he would think it was not being effective and he would take her off of it.

That being said we started pulling BFM off of all medications that wasn't vital to her health and physical well being. Cut her down on the Xanax, Took her off of Aricept and Namenda, and cut her down and eventually took her off of Wellbutrin (for depression).

We noticed that once we got all of those things out of her system that her hallucinations pretty much stopped, her agitation still comes around from time to time but we give her .25 mg of Xanax for it when she needed it some days she didn't. She started sleeping at night (which she had not doen for almost 2 years).

Now I asked myself. Is this just progression of this disease and that is why some of it stopped or Did taking her off of some of the medication cause teh change in her???

I guess I will never know for sure.. but I do know that it is much easier to be her caregiver now that she is off of everything.

She has progressed and that is very hard because she is in her last stages and can not do anything for herself now, but at least I am not battling hallucinations and anxiety to go along with her decline.

Ahhh....this is what I am finding so hard about all of this. The drugs--are they helping or doing nothing?

Let me illustrate. In September 2006, my mom was working a full-time job, driving, going places by herself. Yes, she was losing her wallet and credit cards and her personality was different. I don't know how effectively she was doing her job, but it was enough to keep it.

January, we went to doctor for memory. Doctor says "well keys and glasses aren't too much to be worried about losing, let's watch what happens." No medications given, no referral to neurologist.

March-last day worked March 7, out on sick leave because of problems at work with memory and sleeping at desk. Doctor March 8, neuro March 18 and the Aricept was started. Namenda started in July.

Today, she doesn't initiate a conversation and when asked a question she answers it with a short answer. She gets "yes" and "no" mixed up. Lots of trouble with finding the right word, but she's close (calls the dog's collar a "leash" and the leash she calls a "collar"). She cannot do more than 1 task at a time. She cannot figure out how to open and use her Advair inhaler - I have to open it for her and coach her to blow out, breathe in, etc. and close it back up.

So we cut out the Aricept and go on Exelon and keep the Namenda this week. My brother commented to me last night that "it was up to us" what we wanted to try with her. This is news to me, I thought that was what HE was for.

The more I think about it, the more I wonder if "nothing" was given as an option. I haven't been to the neuro appointments. My brother takes her because the doctor is by his house. My brother is also someone who will try everything available even though the end result is going to be the same. I'm about ready to try "nothing."[/b]

Wow. Great discussion.
I'm getting ready to start Daddy on Haldol (sp?) for
agitation, and he's been on Razadyne for 6 years and
Namenda for 3. Maybe we'd do better taking something
away than adding yet another thing on top?
Sure is food for thought...

It's so tough because if I ask mom how the new drug is, she always says "it's better."

Today I asked her how the Exelon felt and she said it made her "happy." I guess anymore she would have to be horribly worse or miraculously better for me to tell if something's making a difference.