My mom is in late stage 6 Alzhimer's. I just learned her primary care physician prescribed it. It seems at this late stage its benefits are modest as she's had a lot of damage to her brain. So my thoughts are why is the doctor prolonging suffering? It's not as if she was less advanced and we'd preserving more mental functioning. Anyone have this situation? I feel like a monster for even thinking I don't want it being given.
I took this up with his doctor. I suggested that DH start taking Donepezil again. I would (more or less) scientifically record symptoms on a calendar to see if DH MIGHT improve or if he'd become worse. Why not give the medicine another chance? Doctor agreed, so DH went back on Donepezil. I kept a calendar for the next four months or so. I noted DH's relevant behavior, which was really not so scientific because who was to say that his behavior was always relevant to his dementia? But what I was really looking for was patterns, and there were some, all downward. I could see no real effect of Donepezil to improve anything, and DH and I were together 24/7, so I observed everything he did. So, again with doctor's agreement, I tapered off until, for the second time, he was no longer taking Donepezil at all. He continued on the downward slide and is now Stage 7.
This test was a lot for me to do at a time when I was already strained to the max with all the things that had to be done for DH. However, I did get some peace of mind by "proving" (sort of) that we'd gone as far as we could go on Donepezil and that there was no point in giving it anymore.
It is entirely the health care proxy decision. With this late stage disease you really have to go with your gut instincts.
Hugs and prayers during this challenging period.
So whoever is now moms POA, should just tell her doctor that they don't want her on any more drugs than absolutely necessary and that Donepezil is definitely not necessary at this stage of the game.
And who in their right mind would want to prolong this horrific disease of dementia anyway? I'm just saying.
There's an established (if debated) clinical rationale for continuing donepezil in someone already on it, partly because discontinuation can trigger a noticeable step-down in function. But initiating it for the first time at late stage 6 / early stage 7 is a much harder position to defend. You're taking on the side effects and the medicalizing of her final stage without the history of it potentially having slowed her decline to this point.
Common side effects at this stage aren't trivial either — nausea, diarrhea, sleep disturbance, muscle cramps, and in some cases agitation. For someone who may already have difficulty communicating discomfort, these can quietly reduce quality of life in ways that are hard to detect.
The honest clinical picture: initiating donepezil this late has very little evidence behind it. Most guidelines and geriatric specialists would consider this a judgment call at best, and many would not recommend it.
I would go back to the doctor and ask specifically: "Why are we starting this now, for the first time, at her current stage? What outcome are we hoping for, and how will we know if it's working or causing harm?"
If the answers feel unsatisfying, you're well within your rights to decline it — and you may also want to ask for a referral to a geriatrician or palliative care physician who specializes in late-stage dementia. A second opinion here is completely appropriate.
You're asking exactly the right questions.