Here is the link for the full article: http://onlinelibrary.wiley.com/enhanced/doi/10.1111/jgs.12770/

Don't Prescribe Cholinesterase Inhibitors for Dementia without Periodic Assessment for Perceived Cognitive Benefits and Adverse Gastrointestinal Effects.

Dementia is a progressive illness that leads to profound disability and total dependence on others. Many fear dementia more than death. Consequently, proposed treatment for dementia is eagerly sought. Unfortunately, there is no truly effective treatment for dementia.

The drugs most commonly prescribed for dementia—cholinesterase inhibitors—do not reverse underlying pathophysiology. At best, they modestly slow neuropsychiatric symptom progression in some people as measured using tests of cognition and behavioral function. This benefit is usually not apparent to the individual or their family. For other people, they provide no benefit and may distract attention from other important aspects of managing dementia, such as education, caregiver training, advance care planning, and behavioral approaches to management.

Moreover, cholinesterase inhibitors can cause troublesome side effects, including gastrointestinal dysfunction and anorexia in individuals who may lack the ability to perceive symptoms accurately and report them faithfully. Measuring the benefit of drugs that purport to slow the rate of progression of symptoms is difficult, given that those symptoms are expected to progress with or without drug treatment. This leads to the recommendation that goals of treatment be clearly specified in advance so that the treatment's ability to stabilize symptoms can be better assessed.

If a benefit from cholinesterase inhibitors is not apparent within 12 weeks, it is not likely to occur. Evidence is lacking regarding any benefit of treatment for longer than 1 year.[4-7]

Sid was put on Aricept in 2006. Namenda was added about a year later. I believe that the Aricept stabilized him for a couple of years. I never saw any difference with the Namenda. About a year or two ago, I asked his neurologist if I could wean him off of the Namenda, since it was expensive, and didn't seem to be making any difference. He then told me that according to studies, Namenda was proving to have no value. ???????????And he didn't tell me this before because........??????? In any case, I weaned him off of the Namenda and never saw any difference.

Since he has been on the Aricept for almost 8 years, and is now in a NH, I want to take him off of the Aricept. Both his neurologist and the psychiatric nurse practitioner at the NH, who is handling his case, warned me that coming off of the Aricept can cause agitation, anger, and rages. I have opted to keep him on it, rather than risk more rage episodes like those that occurred when the NH tried to reduce his Risperdal.

The non cynical part of me believes that these medications are initially prescribed to give hope to families for a situation in which there is no hope. My cynical side believes that patients are kept on these medications long past their effectiveness in order to provide maximum profit for the drug companies.

joang

Coming from the medical community, I do not think that physicians keep patients on these drugs to maximize profits for the drug companies - the actions of one physician can not impact a huge company and most physicians aren't organized enough to act en masse. More likely, they keep patients on the drugs because they don't know for sure whether it makes a difference. If a physician took a patient off a drug, then a study came out that said drug "may" help the patient and if that study was buried in a journal somewhere, it is possible that an aggressive attorney and family could file a law suit claiming malpractice. So much of what physicians do and order is to document and verify and redocument what they do so if it comes to trial there is evidence for a defense.

Have you seen the ads on televisions blaring out "BAD DRUG" for Risperdal? "If anyone in your family has been given Risperdal and developed gynocomastia, call 1-800-BAD-DRUG"??
We should be very, very worried about this. It is possible that a class action law suit like this might force the pharmaceutical maker to cease production, or its use could be limited to a very narrow range of symptoms/diseases. If that happened, it is possible that the drug would no long be available for dementia behavior problems OR it would not be covered by insurance.

There are more and more drugs that are becoming hard to get because of manufacturers deciding that production just is not worth the hassle. Versed is one example - a short acting light anesthetic used for minor procedures like colonoscopies.

The Trial Lawyers have one of the most powerful lobbies in Washington, and with too many attorneys as it is, there is a huge feeding frenzy in our society. Just look at the ridiculous mandated labeling on many items. Look at the attorney fees for some of the class action law suits. It is obscene.

Yes, big pharma needs checks and balances, as do physicians, and you and I, and most especially the attorneys who are bullying the whole system. No one can read the threads here without understanding that for some patients Risperdal is a godsend, but the only way of knowing if it works is to try it. As for side effects, all drugs have side effects. The job of the physician, the patient and/or the patient's family is to weigh the side effects with the benefits.

Yes, Joan, I understand your frustration, as I opted to have Aricept discontinued after three years. I second guess myself sometimes wondering if I did the right thing. Fortunately, the doctor agreed with the decision. Has the medical team provided you with the papers or statistics that support their decisions? One would think that if they weaned Sid off the drug slowly, side effects would show up and the drug could be restored to its original dosage. Since ALL PATIENTS ARE DIFFERENT, there must be some reason in this case that would make them expect an escalation in behavior issue and question the use of psych drugs like Risperdal. You are so informed that I do not doubt that you have asked these questions - I bring them up for the benefit of other readers.

Joan, you can read examples in our forum here of those that use aricept for agitation of their spouse. We know that is one good result from it. When we talk about taking our spouse off the drugs I remember back to what the geriatric doctor we had with us for a while said. He said he takes patients off but keeps a close eye on them. If within two weeks there is a change he puts them back on them and will usually go back to where they were before they came off.

Since these drugs only work for less than 50% of people who take them. as said before: until they are withdrawn we do not know if they helped or are still helping.

I for one, even if it was found to be helping him to stay cognitively functioning, when he gets to a point where the quality of life, his ability to enjoy it has dropped, I would rather stop it and let him go into the depths of the disease where hopefully he is not aware of his losses.

If a benefit from cholinesterase inhibitors is not apparent within 12 weeks, it is not likely to occur. Evidence is lacking regarding any benefit of treatment for longer than 1 year.[4-7] = double speak academic BS Please someone explain if the disease is a slowly progressive disease which doesn't advance/progress at a fixed and definable pace, given that every patient is different, how can the above be taken as serious commentary?

I asked my DW's PCP repeatedly would the disease progress faster or at a different rate if I were take her off of Aricept. She had been on the drug for 5 years with no side effect. His response was: " I don't know for sure, you and I both know what the literature says, you've read it as have I. If you want to withdraw the Aricept, then go ahead, I'm not going to say yes do it or no don't." I chose not to withdraw Aricept until it became apparent that Cancer was going to claim her life at the nearly the same pace as her end stage dementia and have none of the doubts Marche mentioned in the post responding to Joan

That is why we need to educate ourselves as much as possible