Unexpected comment from doctor…

LaneyG

My DH has the “Agonos” thing ( not sure I will ever recall that full word). Yet he is so painfully aware that his brain no longer works right and that he can’t think and do things any more. He cries and says he prefers to die. I was explaining this to the doc. I was a bit floored when he said that some find this to be the most difficult stage. He said it is not unheard of to stop meds like galantamine and meantime designed to slow progression in order to speed up progression. Wow…this seemed so very “not right” to me. But if it helps his emotional pain more quickly…I dunno. Has anyone heard of this?

Denise1847

Hi LaneyG,

I have not heard this specific to Alzheimer's but for other illnesses where people are suffering and meds/treatments are prolonging the disease and suffering. Things to consider: Does your DM still have enough capacity that his cries and preference to die are reflective of his wishes? Does he have Advanced Directives that describes his wishes?

I recently completed a new Advanced Directives and requested that the attorney insert language that if I get Alzheimer's/Dementia that I do not want life-sustaining interventions even if I am in the beginning stages. It terrifies me after seeing the suffering of my DH.

This is a very interesting question and I look forward to seeing others' thoughts on it.

Marta

Laney: medications like galantamine and memantine do not actually slow the progression of AD. What they do is help manage the SYMPTOMS of the disease. The brain damage continues undeterred. Therefore, stopping these meds does not hasten brain destruction, but what we see on the surface (symptoms) may be more pronounced.

M1

Agree with Marta 100%. No need to feel guilty if you stop the medication. If you're not sure that it's having any effect, you can stop and see how he does. You could always reintroduce it if you wanted to, but sometimes you don't know unless you try.

mrahope

We stopped giving Namenda to my DH a couple of months ago and I've noticed no changes in him. It seems these meds are not quite as useful to every individual.

CindyBum

My DW went through a period recently of saying she’s “on too many meds” and she had started to have minor, and kinda sweet, delusions. The Dr recommended stopping the galantamine because of the delusions.

We stopped for a few weeks. The increase in her despair was terrible and so hard to see. Pacing, crying, looking, looking for something constantly. We put her back on the galantamine and she feels much better. The bunnies in our bed delusions haven’t returned either and now I don’t really care if they do.

I’m intellectually prepared to stop other meds (like her statins) at some point too, but am not sure if my heart is ready for those things.

harshedbuzz

@LaneyG

For us the middle stages were hardest.

Dad still had enough with-it-ness to know his memory was bad, but he didn't appreciate the other pieces to the disease like high order reasoning and executive function that were big factors restricting IADLs (like driving and managing money) and leaving him out of important decisions (like selling his homes and moving him near me). In dad's case, this led to anxiety and depression that were expressed as agitation and aggression which we chose to address with psychoactive medication prescribed by a geriatric psychiatrist. That might be an option to help your DH feel less upset.

Dad's neurologist didn't recommend any of the medications which are typically prescribed when a person is diagnosed. Dad was well into the middle stages of mixed dementia at that point. His doctor told us that they don't stop the disease process at all and only help a fraction of the people who take them function better and then only for a limited time. Additionally, many PWD have significant GI issues with them.

You wouldn't be speeding progression in any way to stop them. If the meds are working currently, being less aware of his condition might be a blessing for him. If they're not, you wouldn't see a change.

HB

Ed1937

These meds were never supposed to slow progression of the disease. They might help with symptoms. Or they might not. FWIW, my wife refused "meds for memory" several times, and I honored her wishes. She never took anything like that. But if she needed meds for agitation or some other difficult symptoms, I would have made sure she had them.

​fesk

I have read Aricept may slow the progression. I can say I noticed a significant difference when my mother was taken off Aricept and Namenda. Part of that may have also been due to the addition of another medication. The medications work differently for everyone. Perhaps an anti-anxiety or antidepressant may be beneficial to your husband.

wizmo

There has been at least one meta-analysis (comparing results of multiple formal studies) concluding patients on memory medications donepezil/memantine/etc may mask symptoms better for a time but ultimately do not survive as long. This came to me from a neurologist advocating against donepezil and offering alternative treatments. We eventually went the traditional path.

https://pubmed.ncbi.nlm.nih.gov/30646339/

ImMaggieMae

My DH took donepezil when he was diagnosed with MCI for a couple years. Things were normal-ish back then, and it was hard to say whether it helped or not. He was also out walking for over an hour every other day which probably made a bigger difference. He was later prescribed Memantine and the donepezil was stopped. I didn’t notice a big difference at 10mg per day but when the dosage was increased to 20mg per day there was a huge difference. His empathy returned, which is still there to this day, somewhere in stage 6. Urinary incontinence stopped for a month or so. (But then returned.) I don’t know for sure if it’s still helping or not because he takes other medications as well, but it seems like it is.

If I had a doctor tell me to discontinue a medication to speed up progression, I would drop the doctor. I am looking to slow progression and do whatever I can to keep my DH as content and comfortable as possible.