Can Alzheimer's patients ever stop memory meds?

Good luck, Ritashelper!

Thanks for all the response. I talked to dr and she said that in her experience patients have declined when taking off ALZ meds. So mom will keep taking them for now. Going to see about getting free samples when she is in donut hole.

Thanks.

It would be in the book "The Myth of Alzheimer's" by Peter Whitehouse, the leading specialist in the field.

Anoni0000, can you provide a link or any details on that clinical study?

Angel, I tookmhave heard of rapid decline after stopping these drugs. But, I have also heard of no significan change to improvement. Each person is different and the discontinuance of the drugs and the effect seem to run the gamut! Everything with the disease is trial and error. What works well for one will not work for another.

I've wondered whether or not I should have my mom take these MEDs. So far, I've decided against it. Her doctors told me that it will not improve her memory loss, they will only slow the worsening/progression of the disease. The doctor also told me that when someone has been taking these meds and then stops, they often experience a very rapid decline in health. I certainly don't like the sound of that, and decided that any benefit is outweighed by that risk. (Anyone else hear of this kind of outcome, or experienced it?)

I know more about my husband's condition and what affects him and does not affect him than his doctor does. She doesn't live with him and care for him. Besides, a lot of doctors "are in bed" with the pharmaceutical vultures. I trust my own judgment when it comes to my husband's dementia far more than I trust my doctor's or her pharmaceutical pals. I wonder if they're going to send her on a cruise this winter.

Allow me to clarify that it was a clinical study that showed there was no difference in patients who took them and those that didn't take them after 3 years. I believe it was documented in the book written by the physician who is the leader in this field. And all drugs are going to create an added burden on the liver and kidneys.

As you see from these responses (a) people feel quite free to vent their personal opinions as if those were tested facts; (b) there is a wide range of experiences. What's useful about anecdotes is they may encourage you to ask the doctors questions, and to ask more than one question of more than one doctor. Otherwise it's dangerous to go by anecdotes!

You are correct; there is no difference in patients after years of treatment. I can add that one doctor thought they might help his cognitive skills and took them. He had to quit because the side effects were so disturbing. I can say they never helped my mother. They may have in fact caused further impairment. Considering the fact that they also place an added burden on the liver and kidneys, one must ask if it's worth it, especially if they cause side effects that some people lack the capacity to express.

My mother entered a nursing home 3 weeks ago and they stopped her Aricept and Namenda without informing me or asking me. She has now lost her ability to dial a phone. Just like that! My advice is, never believe anything just because someone says so! You must make then substantiate any claims. If your loved one tolerates it well, let them continue because you never know what help these meds are providing.

My mom was on Aricept but the changes were not for the better. I talked to her home health RN about pulling it. She suggested I give it every other day. The days on, she is worse so I'm going to every third day and so on till she is off. She is also on Effexor. I'm starting to question that but I work with the mentally ill so will discuss this at her next doctors appointment. I think many meds out there help some but I have yet to see enough benefit to offset the cost and bad side effects.

The doctor prescribed Namenda and Exelon for my husband soon after he was diagnosed, but after a couple of years on this crap, I stopped giving them to him. I noticed that the Namenda seemed to cloud his thinking, and I was very afraid that he might accidentally put an Exelon patch in his mouth and eat it. I think this stuff is just another way to fatten the billfolds of the pharmaceutical vultures.

I halved my mothers Nemenda and Aricept. Too many side effects. When I mentioned it to her heart Doctor he said "A lot of elderly patients need pediatric doses". He seemed to be the only gone that got it! She was much better without all the meds. In addition I took her off a sleeping pill, halved an anti anxioty pill. stated giving her quite a few vitamins, Vitamin D and Folic acid, B12...She did much better!

My mom is now off Aricept after 5+ years. I'm not exactly sure because she was taking it before anyone knew she had a diagnosis. It was not helping anymore. She has continued to decline a lot this past year, so why bother.
She's also come off several other meds that are fairly pointless like her bladder control pill and one of her cholesterol meds.

I discontinued Aricept and Namenda to witness no change in my wife's dementia.

My mom's doctor said the memory meds don't help with those diagnosed with Alzheimer's because the underlying cause with Alzheimer's is the protein build-up on the nerves. The meds (Aricept and Numenda) help with the Serotinin levels which helps Dementia. The meds only help 50% of people for 6-12 months from the reading I've done though.

Well I started taking care of my husband's grandfather I started him on Namenda (thinking hey it will help!). Then we feel into the Donut Hole Gap and found out how much all these drugs were really costing! Absurd. I changed from the Exelon patch to Galatmine (sp?) and just recently consulting with the doctor to take him off of Namenda. It has been a year and there has not been a difference throughout the process. Of course at this point I'm not sure if the Galatmine (again sp?) is doing anything positive or helpful but next appointment we may bring that up.

I like what Jody4932 said about less agitation after weaning her mom off of Namenda. I hope that is gpa's positive outcome also!

I weaned my mom off of Nemenda after taking it for 5 years. Like you, I was hearing about loss of effectiveness, and yes, its expensive. I spoke with her Dr. and she agreed we could try it. Mothers memory isnt any better or worse but I see much less agitation and can sort of reason with her a little better.

Hi Ritashelper,

As mentioned by several people on this thread, some people get better once they are off the drugs, so you are right to question her being on them too long.

Several studies have found that there is a time frame where the medications help some people (not everyone by any means) but once they pass a certain place in their disease the medications no longer help and may do harm because of side effects.

This is something that you need to discuss with the doctor. You are also free to seek a second opinion. You're smart to question any drug and also question the length of time the drug is given.

Please keep us posted as you go through this process.
Carol

Now you have just found out why the pharmaceutical companies are so wealthy! No drug yet has been proven to abort dementia, and I stopped all those drugs for my husband after a few days due to the side effects. He is still living, he is not drugged, does not suffer from side effects, and is much happier. Dementia is a terminal disease and until someone discovers how to arrest it, nothing is going to help slow the disease. That said, yes, if you have MPOA for your mother you may stop those drugs. Discuss your displeasure with the drugs with her doctor and see what happens.

SIDE EFFECTS: The most frequently reported side effects associated with donepezil include headache, generalized pain, fatigue, dizziness, nausea, vomiting, diarrhea, loss of appetite, weight loss, muscle cramping, joint pain, insomnia, and increased frequency of urination. Seizures, fainting, abnormal heart beats, and stomach ulcers also may occur. Tacrine (Cognex), another anticholinesterase medication used in the treatment of Alzheimer's disease, is associated with liver toxicity. Donepezil does not appear to be associated with liver toxicity.

Reference: FDA Prescribing Information
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When Should Alzheimer’s Drugs be Discontinued?

It can sometimes be difficult to tell if Alzheimer’s drugs are providing any benefit, especially after they have been used for several years, because no one knows how quickly the disease would have progressed without them. Sometimes, caregivers believe the drugs are not doing any good and decide to discontinue them. Studies have found that some patients may decline rapidly once the drugs are discontinued; and even if the drugs are restarted, these patients may be stabilized at their new level of cognitive function but will not regain their former level of function. However, other patients show no discernible effects when the drugs are stopped; and some may actually improve when taken off one or both drugs if they have developed adverse effects from them.

If you decide to stop giving your loved one these drugs, it is always a good idea to slowly wean your loved one off the drugs, one drug at a time. That way, if the loved one experiences a sudden decline in abilities, the drug can be restarted before significant damage is done.

What about when the loved one is in the advanced stages of Alzheimer’s? There is no substantive evidence that these drugs prolong life. As far as is known, they simply help the damaged brain function better than it would without them. But sooner or later, there comes a time when it seems senseless to keep on administering these drugs.

When to discontinue Alzheimer’s drugs due to progression of the disease has not been studied per se, and many healthcare guidelines don’t even address the subject. The ISOA guidelines recommend that physicians discontinue Alzheimer’s drugs if patients reach “profound” stages of dementia, when the patients has no cognitive or functional skills left to preserve. Note that there is a distinction between “severe” and “profound” dementia. The guidelines from the American College of Physicians and the American Academy of Family Physicians indicate that “if slowing decline is no longer a goal, treatment with [Alzheimer's drugs] is no longer appropriate.” Others have stated that treatment should be withdrawn at the point were a patient is entirely dependent in all basic ADLs, and the family and physician believe that “meaningful social interactions and quality of life benefits are no longer possible.”

London, mom's doc also told us that some meds can have an anorexic effect. mom has been losing weight unintentionally and steadily. She is almost 40 pounds lighter than she was three years ago. It has been a very gradual loss. Stopping Prozac has not had any bad side effects and the weight loss continues; must be due to progression of Alzheimer's.

I took my Mom off of them and she was actually better! There has been nothing proving that Namenda or others actually stops progression. My doctor didn't recommend, but stated honestly it had not helped my Mom and made her more agitated. There are many articles regarding this medication and I would definitely read them before making a final decision. God Bless!

My mother-in-law, with advanced dementia, was not eating very well at all. Doctor said some meds can cause anorexia in older patients. He stopped the memory meds she had been taking and her appetite has gotten better.

After talking with several MD's about this, I took my mom off the meds.
They only really help about 20% of users (if that) and in some cases make them irritable while on them. After 5 years I would talk with a Doc or two and you may end up stopping them and saving $$ while you are at it.

My dad switched from the exelon patch to the pill Rivistigmine. Same great results at a fraction of the price.

Don't rely on "once I was told…"

It is, on the other hand, completely the correct thing to discuss her medication with her doctors and ask them to review it from time to time. You are correct, there has to be a point to medication; so unless they can point to the balance of probabilities being that she is benefiting from her current drugs regimen then, yes, it should be changed.