Has anyone had luck with Aricept or any other related medications?

awakening, I am afraid that you are right about some drugs, Aricept in particular, being asked for and prescribed in spite of limited benefit, because caregivers and doctors both want to try SOMETHING to alleviate the symptoms of dementia. Even if I knew there was only a 20% chance of a drug helping, I'd want to try it. But if it didn't help I would not continue it for years.

Aricept was developed for Alzheimer's, but as it turned out it is more effective with Lewy Body Dementia, probably because there is less brain cell death in LBD and the drug has more to work with. It apparently continued to be effective for the 9 years my husband (LBD) took it, based on this reaction when we discontinued it on hospice. My husband's case was very unusual, though. I expected to learn he had a very mild case, based on his functioning throughout the journey. I was very surprised that the autopsy revealed that "the density of Lewy body pathology was as marked as any other individual we have ever evaluated." One of the factors of his relatively good quality of life was the effectiveness of drugs in his case. Why in his case but not in other cases that appear to be similar? The answer to that in the autopsy letter was "we don't know."

I am glad that intense research is going on not just by drug companies but by all kinds of agencies world wide. Wouldn't it be great if there were some biomarkers that would help identify those patients who are most likely to benefit from certain drugs?

All dementia drugs being used have demonstrated clinical effectiveness (masking symtoms - no actual delay in progression) in only approximately 20% of users with Alzheimer's, with a MAXIMUM DURATION OF BENEFIT of 18 months. If no side effects are experienced it may not be harmful, but it is a pharmaceutical sales travesty that keeps people in these drugs for years. They are very expensive, can't really know if they are working (or disease progression is following it's natural trajectory in a given individual) unless marked improvement is seen, and our fears & helplessness (and that of out health care providers) @ this disease have made our exploitation for drug company profits the norm at our (and medicare's) expense

Thanks, Paul..!

Excellent commentary, PaulaK. Thanks for sharing.

BunnyIL, it depends on the dementia in question. Does your Dad's doctor have reason to believe he has a dementia that Aricept may help (i.e., Alzheimers or Lewy Body)? I ask because I have noticed that some doctors and nurse practitioners have a tendency to suggest Aricept and Namenda for ALL dementia patients -- possibly because patients and sometimes families are looking for something they can do in the face of such a difficult disease.

But while studies have indicated that cholinesterase inhibitors like Aricept can be helpful in Lewy Body Dementia and Alzheimer's, they are not recommended for people with frontotemporal dementia, like my father ... in fact, they can actually exacerbate agitated and inappropriate behaviors in FTD sufferers because cholinesterase inhibitors boost levels of a brain chemical called acetylcholine that is depleted in Alzhiemer's but not in FTD.

Similarly, the largest randomized, placebo-controlled double-blind trial in FTD yet performed (http://www.theaftd.org/wp-content/uploads/2009/03/Memantine-FTD-Lancet-Neurol-2013-Boxer.pdf) shows absolutely no clinical benefit of Namenda (memantine) to FTD sufferers (in spite of 30% of people diagnosed with FTD being prescribed this drug, sometimes along with Aricept).

When we first got my Dad's FTD diagnosis, I did a lot of reading and research about both drugs and talked to my father's neuropsychologist at length. There simply is NO clinical evidence that either or both of these drugs, individually or in combination, is at all effective in slowing the progression of FTD ... and a fair amount of good clinical evidence that they are not effective in doing so. Given this ... and the expense of these drugs ... and the potential side effects ... and the fact that my father did not really want to take ANY medications ... and that if I pressed him to take one or both of these drugs in spite of his not wanting to do so and there being no clinical evidence to suggest that there was any BENEFIT to him to doing so, we'd have to take on the expense not just of the drugs but of additional caregiver time to manage the medication administration, which would use up money that might be better spent on care later on his journey ... we made the deliberate choice not to start down this path.

His neuropsychologist completely agreed with and supported this decision.

Two weeks later, I took my Dad in to see his primary care provider (a nurse practitioner) to get his POLST signed and do a general exam, and when she took a history and heard the word "dementia," she immediately asked if we wanted an Aricept/Namenda prescription, because it had "helped a lot of" her patients "with dementia." A little gentle probing on my part made it clear to me pretty quickly that I knew more about how Aricept and other cholinesterase inhibitors are designed to work than she did ... and also more about FTD. That's okay; this is why my Dad sees a dementia specialist for treatment specific to his dementia. We just thanked her and said we'd decided to forego that kind of medication.

That was OUR decision ... but remember, my Dad has undergone several rounds (over the past year) of extensive standardized cognitive testing, and the patterns are uniformly indicative of FTD, not Alzheimer's or LBD. If your Dad's doctor has reason to think he has AD or LBD (and yes, I know none of these can be definitively diagnosed until post-mortem), then it may well be worth trying one or both of these drugs ... and, if your Dad is tolerating them well, giving them a reasonable try.

This being said? I am never sure how much we can rely on reports that anything one is doing is "slowing the progress" of dementia ... because we don't know what the dementia would be doing without that thing. Even without drugs, my Dad has had long periods of absolute stability ... followed by sharp slides ... followed by sudden periods of apparent "improvement" that can last for weeks ... followed by sharp slides ... followed by weeks of stability ... and so on. His neuropsychologist says this is the nature of dementia. The temptation to look for cause and effect is impossible to resist ... but you have to take it with a grain of salt.

I think you can fairly easily and accurately observe whether any drug is making someone calmer or happier or less combative or more inclined to smile or less likely to hallucinate than when they aren't on it ... but because Aricept and Namenda are not drugs that you take for a few days and then don't take for a few days and then take again and then not again, no one is really in a position to accurately say whether they are slowing the progress of dementia or not ... because it is simply not possible to know how the disease would have progressed in the absence of the drug.

Aricept and Namenda will stabilize the dementia. We may not notice any difference in a loved ones cognitive abilities but it can slow down the progress. I have noticed with my mother that it has slowed down the progress.

It may not work for all dementia patients, but I am not sure about giving one dose and having such a reaction. Anything is possible with dementia and drugs.

I'll be honest, I don't think it slowed my Dads progression. BUT.. when he moved here he got very agitated and angry. Our new Dr upped his dose to 10 mg and he got so much easier to be around. Less angry, more co operative and happier. That is all I ask for.. for him to be happier here. I don;t believe anything will reverse this or stop it, so I am happy with him being happier. He would hate to know how this has happened to him

My Mom is on this. I do not know that it has helped, except that it seems to slow the progression of dementia...But i agree, I think it is a different experience for everyone...

ALL treatments for dementia are hit-and-miss. To know whether they are a hit for you, you have to try them.

I read an article that said half of dementia doctors always prescribe Aricept, and half never prescribe it.

My husband is only 68 and very healthy, so we're trying everything. We will stop anything that causes bad side effects. At first he had constipation, but that seems to have stopped, even with a higher dose.

You have to try it to find out if it will help YOU. If your elder often has major side effects, then maybe decide not to take a chance, but my understanding is that it's not a very dangerous medication.

JennyM, my father had an episode after Aricept.. By hit or miss, I hear mostly bad things about Aricept, and that it has about a 20% success rate.. Before we try it again, just want to hear some other experiences with Aricept or any other prescriptions for treatment..

What is hit or miss?

My husband took Aricept for 9+ years. It was effective right to the end (which we found out when we tried to take him off of it on Hospice care.) My husband had Lewy Body Dementia, and Aricept is especially effective in that disease.

With any drug, you really have to take it consistently as prescribed to judge the results.

What do you mean hit or miss?

My husband takes it and I think it helps. He had no side effects. We're going to try Namenda too. Fingers crossed.

Hubby had psychotic event about 8 hrs after first dose. Needless to say, I never tried him on any others!