Saturday, January 9, 2010

Aricept Works For Us


Aricept is not a cure for Alzheimer's disease, and it does not stop Alzheimer's. When it works well, it is designed to slow the progression of Alzheimer's and improve behavior.

By +Bob DeMarco 
+Alzheimer's Reading Room


Aricept (Donepezil) is the number one selling medication for the treatment of Alzheimer's disease. It is also the most controversial. A search for the word Aricept on Google brings up 1,620,000 links.


Based on the emails I receive from readers of this blog, I can say many people are disappointed with the results they get from Aricept. In a more detailed email discussion with these readers, I often learn that their understanding of the drug and its likely impact are not well understood.

Aricept is not a cure for Alzheimer's disease, and it does not stop Alzheimer's. When it works well, it is designed to slow the progression of Alzheimer's and improve behavior.

You can go to the Aricept website to learn more about the medication. Here is some information from the Aricept webpage.
  • Studies showed ARICEPT slows the progression of Alzheimer's symptoms.
  • It improves cognition, which may include effects on memory.
  • It slows the loss of overall function, which may include effects on everyday tasks.
  • ARICEPT is the only treatment proven effective for all stages of Alzheimer's.
  • It is the #1 prescribed Alzheimer's medication.

ARICEPT can help with behavior problems in mild to moderate Alzheimer's.
Here is the single biggest problem I see. It is impossible to know how a patient would have done had they not taken Aricept. As a result, you cannot compare the results to anything that is tangible.
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I know from experience that some sufferers of Alzheimer's deteriorate very fast. I have seen it. Others deteriorate slowly, over the course of 5-20 years. It is not unusual for a person to suffer from Alzheimer's for a decade or more before they die.

I think it is safe to say that Aricept works differently in different people.

The result for persons I have observed on Aricept vary. Some stay the same for an extended period of time -- they stabilize. In some, certain symptoms improve while others worsen. In some, there is a slow steady continual decline. And in some, the medication didn't seem to have any impact.

Most of the outcomes that I have seen in person are positive -- but not all of them. The real measure of effectiveness depends on the perception and level of expectation of the caregiver and family. It is not unusual for a person to say after the death of their loved one that Aricept didn't work. My own observation of the same situation lead me to believe that Aricept was working to the benefit of the patient.

Aricept is not a cure. It is a treatment that buys time. A discussion of the value of time when discussing someone that suffers Alzheimer's means very different things, to very different people.
FULL DISCLOSURE: I am not a doctor. I am not a scientist. The entire contents of this article are based on my private research and experience. You should not decide anything based on this article. If you find the information useful, or of interest, I suggest you discuss the information with your personal care physician or specialist doctor.
It took me almost two years before I finally put my mother on Aricept. It took me more than a year to find a competent personal care physician.

One doctor, willy nilly, wanted to put my mother on an anti-depressant medication. I rejected this recommendation immediately. The doctor could not give me enough information, reasons, or a good enough understanding of the risks involved to convince me that this was an appropriate or needed treatment. This was a personal care physician that refused to send my mother for an MRI and the appropriate neurological consult.

My advice right here. Don't allow any personal care physician to put your loved one on an anti-depressant without two or more opinions from specialists. This could end up being the best advice I can give.

I have seen it many times folks. Doctors love to prescribe anti-depressant drugs. There is substantial research showing that as many as 70 percent of the persons taking anti-depressants don't need them. I believe many people that are suffering from dementia and Alzheimer's are on anti-depressants rather than the appropriate Alzheimer's medication. I have seen this first hand. The result can be uglier than Alzheimer's if can imagine it.

I want to interject something that I did not know or understand. At the time I was seeking an answer to my mother's behavior, personal care doctors were working on "capitated" contracts" in the state of Florida. This means that they received a "fixed" dollar amount for each patient regardless of health across their entire practice. The difference between what they received from the health care insurance company and what they spent equaled the profit they made for the year. In the instance I described above, if the doctor had ordered expensive tests it would have come out of his pocket.

This is part explains why I had a problem getting a diagnosis and the appropriate medical test. This was six years ago and in most places things have changed.

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Our third doctor literally threw the Aricept prescription at me and said she has Alzheimer's. No test. Not MRI. No nothing.

I think she thought she could intimidate me. Not a chance. I shudder when I think back. This doctor had one of the largest, if not the largest, personal care practices in my area.

At the time I thought, most of these elderly folks don't have me. What is going to happen to them?

Over the years I am learning a harsh lesson -- many personal care physicians are pill pushers. Ten minute appointment -- here are the latest two prescriptions. When you get really sick I'll send you for some tests. I see this happen every day right here in the Pines of Delray.

My rule of thumb is very simple. Ten percent of the personal care physicians are excellent. Twenty percent are good. The rest, well they are just what they are.

If you don't have the time or energy or will power to find someone in the ten percent -- God bless you.

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It took me what seemed like forever. Finally, I found the wonderful Dr. Carlos Chiriboga. I explained the situation to him. We received the referral for the MRI shortly thereafter. First, he had to treat my mother correctly and properly for pneumonia. That small experience told me -- finally, I found the right personal care physician for my mother. I was right, he was the best.
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By the time I decided to put my mother on Aricept it had been almost two years. By then, I had read everything under the sun on the medication, and the alternatives.

Let me make this clear, it was a no brainer. The only downside I could see was the possible side effects. The potential reward out weighted the risks.

There is one more potential fly in the ointment. Aricept is expensive. However, it appears that a generic form of Aricept will be available soon.

If the cost is a problem go here and see if you can get some relief. Don't be lazy. Do it!
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I no longer remember the exact time lag, but my mother started benefiting from Aricept soon after she started taking the medication.

It was clear to me that her memory loss stabilized for a time, and even when it started to decline the decline was slowed.

The single biggest benefit we received from Aricept was smoothing out in my mother's behavior. Her behavior did improve. She was not as mean, and she didn't act out as many crazy, gut wrenching behaviors.

I believe Aricept can have a positive effect on behavior. From my viewpoint this was the more important development.

If you are a long time reader, you know I introduced many behavioral changes and communication techniques into the daily caring for my mother. There is no doubt that many of these techniques stabilzed and improved her behavior. However, I am personally convinced that Aricept played a significant and important role in those behavior changes.
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Here is one good example.

My mother would open the door on our refrigerator and freezer and leave them open. While they were open she would take inventory of what was in both. Sometimes she would start unwrapping the frozen food so she could see what was inside the wrapping. This was not limited to items that I had wrapped -- like a steak. She would also open frozen foods that were in boxes and take a look. When she was done looking she would put the food back in the freezer unwrapped or half wrapped. Sometimes she would leave frozen foods on the counter. Like a steak at 8 AM in the morning.

When my mother would leave either door open. The refrigerator would start to beep. This is a fail safe in case you leave the door open or ajar. Our particular refrigerator starts to beep more rapidly and louder the longer it is left open. It is almost as if the refrigerator is getting angry. Of course, back in the early days I was still an Alzheimer's hamster and I would also get angry.

I would hear that refrigerator beeping at 1:30 AM, 4:30 AM and all day long. Try telling someone suffering from Alzheimer's to close the door, or worse not to do it. Try telling them they are doing it over and over. Wait and see the reaction you get. It won't be pleasant and its a lot worse then having a bad hair day.

When someone I meet tells me this or something similar is happening to them, I often tell them to start banging their head against the wall (their head, not the person suffering from Alzheimer's). Later I ask them, what hurts worse? Sooner or later, they figure out banging your head against the wall -- literally or figuratively -- doesn't really get you anywhere when dealing with Alzheimer's.

Sometime after my mother started talking the Aricept she stopped opening the refrigerator/freezer and stopped staring into both. How do I know it was the Aricept?

Back in November, I took my mother off Aricept in preparation for the Dimebon clinical trial.

In late December my mother starting doing it again. She started opening and leaving the door on the refrigerator open while she starred in at the contents. The beeping started again. This time around it doesn't drive me crazy -- I got off the hamster wheel. I now know how to handle the situation without sending her in a tailspin.

My mother is also trying to cook, something she had not done in years. She is once again repeatedly opening the front door and looking outside, something she had not done in years.

I could provide many additional examples, and I will if you ask questions in the comments box.
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There are a few more interesting things that happened after my mother stopped taking Aricept.

One day she did half a crossword puzzle. Granted most of the answers were three and four letter words, but she had not done that in years.

She is also turning the shower off every couple or few times, something she had not done in years.

Go figure, huh?

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If someone asks my opinion on Aricept, my answer would be similar to what you have read above. Obviously, I could provide more depth and detail if I was talking to you in person.

Maybe someday I'll start doing podcasts to solve that problem. Well, as soon as I actually learn how to do a podcast and get it up on the Internet.
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I did receive several emails from readers that started on Aricept and had to stop due to side effects.

My mother did not experience any major adverse side effects from the medication.
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In the end, you will need to make your own decision by weighing the pros and cons, the risk and the reward.

You won't have any problem finding articles that are knocking Aricept for being ineffective, or not very useful. You can read and read and read, and you'll end up confused. If you are going to investigate before making a decision, try to stick to articles on reputable medical websites, or reputable publications.
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When it comes time to make the decision -- trust yourself. Just try and do what is best. That is all that any of us can do.

Do it we must, and do it we can.

My name is Bob DeMarco, I am an Alzheimer's caregiver. My mother Dorothy, now 93 years old, suffers from Alzheimer's disease. We life our life one day at a time.

I often get asked how we are doing. Under the circumstances I would have to say we are doing very well. However, I reserve the right to change my mind every fifteen minutes.

Original content Bob DeMarco, the Alzheimer's Reading Room