Behavior/cognitive changes after discontinuing donepezil and memantine

starwood

My DH just entered hospice. He was on maximum dosage of both donepezil and memantine but the hospice doctor immediately wanted to discontinue donepezil and lower memantine with the goal of stopping it as well. First, let me say, it was obvious my DH’s physical ability was declining when he was screened for hospice, but mentally he was still doing pretty well with some confusion and occasional disorientation, content and compliant. After the medication changes, however, he has had his first episodes of sundowning, where he awakened in the middle of the night, talking to people who weren’t there and seeing things. He has also been much more disoriented and confused during the day. Prior to this, he was content to sit in his wheelchair and “watch” TV, but now he tries to get out of the chair to go somewhere (mall, on a walk, to the office, etc). He becomes obstinate when I try to redirect him (“stop trying to distract me” and “you can’t tell me what to do”). I am wondering if this new behavior could be contributed to medication changes or are they an overall decline to be expected from the disease itself. Hospice nurses assured me when I questioned them about discontinuing that they had not seen any cases where it made the person worse. So, anyone have any experience with this?

SDianeL

I believe omitting medications and then a behavior change could be the cause of the behavior change. Why did the doctor take him off it? I would ask them to put him back on the meds or try different ones. Write down a detailed list of his behaviors and give to the doctor and nurse. Many hospice nurses and doctors don’t understand dementia. A Geriatric Psychiatrist is best to manage meds. Get a referral to one. There is no reason for your DH to be anxious and agitated. I would demand they do something.

​fesk

I would see about putting him back on the medicine. Hopefully, he hasn't been off it long and restarting will not be an issue. I think many hospices discontinue these medications as a matter of course.

Quilting brings calm

Hospice normally discontinues meds except for comfort care. The meds you mention are for an earlier stage of dementia. However - you can request that they be restarted because he’s less comfortable without them.

starwood

Thanks for the feedback, and yes you’re all correct. Hospice does usually discontinue all meds except for comfort care. Their rationale for discontinuing in DH’s case, in addition to the above, was that those meds are typically for earlier stages. However, as I’ve learned the hard way, every person’s decline is different and not all follow the typical pattern. So far, it seems DH is one of those. I’ve learned through this experience, though, that what I previously thought was hard was just a preview. And I know that this recent behavior is again only a precursor. I hope I have the strength to deal with it.

MN Chickadee

This comes up every so often here, where a person is advised to discontinue those meds in late stages and the patient takes a nose dive. It certainly happens, though not to everyone. It is also possible it was a coincidence (perhaps he had a TIA, urinary tract infection, or some other reason for a sudden decline) but it's hard to know. I would push to re-start the meds for a while and see if it helps. It's not as though they are banned under hospice, they are just following standard procedures to reduce unnecessary medications but it sounds like he needs a more nuanced approach on the drugs.