When do you stop the Alzheimer’s meds?
Recently, researchers were disappointed by the fact that a new, potentially groundbreaking drug called Dimebon failed to do any better than a placebo in a phase III clinical trial. A previous smaller study seemed to reverse the effects of Alzheimer’s.
Here is a link to one of the stories about the trial and a link to the Alzheimer’s Association statement about the drug.
There are several drugs on the market right now that slow down the disease — including Aricept, Namenda and Exelon. My mother takes both Aricept and Namenda, and was on Exelon for a while. The big question for me came up as a result of a support group meeting John and I attended. Doctors and researchers seem to agree that the current drugs available benefit patients for a year or two, and maybe a bit longer. But as someone asked at this support group, what happens when the drug stops benefitting the patient? Maybe these drugs can extend the length of someone’s life even after their other benefits stop. Is it fair to keep patients on the drug simply to extend their lives when they can no longer walk, talk, feed themselves or even make eye contact with a caregiver or family member?
We discussed this at a conference John and I had with his mother’s caregivers. Because my mother-in-law is totally dependent on others now for mobility and feeding, we were concerned that we were facing the decision of whether to keep her on the Alzheimer’s drugs or take her off them. The hospice nurse gave us some clarity when she told us that anecdotally, taking a person off the medication seems to accelerate her decline. For instance, she will lose her ability to swallow faster once she’s off the meds. So, when do we know it’s time to let go — time to take someone off the Aricept, Namenda or Exelon? Again, she said that anecdotally, an Alzheimer’s patient will start “pocketing” food in her mouth without swallowing it, keeping it in her cheeks, as if the body is finally saying it’s time to let go.
We were relieved to hear this because despite having to be fed by hand, my mother-in-law still has a great appetite, and she still occasionally makes eye contact with us, though she doesn’t really speak to us. It isn’t time for us to make that decision, but we foresee that it’s coming and it’s not going to be easy. I hope we have the courage to do the right thing when that time does come.