My mom is in Assisted Living. She has been on Exelon patch for about 5 yrs and Nemenda for about 4 yrs. Once I was told that after 4 yrs people on the meds are about the same as people who never took any meds. Does anyone have any experience with this? Is there ever a time when patients can go off meds? Do they get worse ? Don't want her to keep taking if no longer effective. Also, they are very expensive as there are not generic versions of these.
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.
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.
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.”
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
I like what Jody4932 said about less agitation after weaning her mom off of Namenda. I hope that is gpa's positive outcome also!
She's also come off several other meds that are fairly pointless like her bladder control pill and one of her cholesterol meds.