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When to stop Donepezil and Memantine?

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My mom's hospice care suggested I let them stop Donepezil and Memantine because her FTD is very progressed. I always second guess what is the right decision with anything related to Mom's care. I asked the benefit to taking her off the meds, and they said (1) she's progressed so much that they don't help and (2) it's hard to get her to take medicine. They said that stopping the meds may cause her to decline quickly. She can walk (a little) but is a fall risk. They say stopping the meds may keep her from walking because of her decline. She is already getting to a point where she doesn't seem to recognize me. I don't know what is truly best for her. Seeing her living like this is tearing me apart. But this isn't about me. It's about taking care of her as best as I can. Any advice?

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  • terei
    terei Member Posts: 698
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    I stopped all my mom’s meds when she began to resist taking them about state 6. I never saw any change in her at all.

  • SDianeL
    SDianeL Member Posts: 1,711
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    I stopped all meds before my husband passed. I would trust the hospice nurse. They will give her medication needed for her comfort. 💜

  • Quilting brings calm
    Quilting brings calm Member Posts: 2,838
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    I think both those medications are helpful in the milder stages, but not once the person has progressed into later stages. I think your mom has reached that point. Why argue with your mom about taking medications that aren’t effective anymore? I agree with hospice.

  • TLN2025
    TLN2025 Member Posts: 3
    First Comment
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    My mom was commenting/complaining about taking so much medication and after reading that these 2 medications really aren't effective once the diseased has progressed to a certain level, I decided to talk w/my mom's neurologist about if there was any benefit. He greed, that her stage (she's at moderate to severe dementia), he agreed the meds were no longer effective and we took her off them. Hearing the stage your mom is at, I would go w/their recommendation to stop these meds.

  • cdgbdr
    cdgbdr Member Posts: 179
    100 Comments 25 Likes 25 Care Reactions First Anniversary
    Member

    We are stopping DH Exelon patch. He is weaning off this week. He's been on it a year and has continued to decline. I wanted to see if he could be helped so tried it. He was previously on Aricept and didn't tolerate it. DH is not hospice appropriate yet. Certainly, if he was, I would discontinue it. The decision was made based on testing that showed decline at an expected level even with the medication. At this point, he tests so poorly that testing is discontinued. He is Stage 5-6.

  • MN Chickadee
    MN Chickadee Member Posts: 947
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    We stopped in late stage 6 for a couple reasons. One, because getting mom to swallow meds was really challenging so with her doctor we paired the meds way back. I believe all she was getting then was her seizure med and mood meds (an SSRI and mirtazapine.) We stopped the blood pressure one, Aricept, and the supplements she had been on. Aricept can make small differences in the early and middle stages but many don't notice a difference when they stop it end stage. And the second reason was because the whole point of hospice is providing a smooth, comfortable, not-draw-out landing. Once mom qualified for hospice she had lost most quality of life. She wasn't enjoying food or experiences. It didn't make sense to me to be giving her a med to try to draw that phase out longer. She would have wanted to be released as soon as possible if she could have chosen. So I didn't mind that withdrawing them could cause a slightly more rapid decline. (In our case it didn't matter, she got covid that sent her into a tailspin and she died a month later.) But I still would have made the same decision on the meds regardless. If your LO has the symptoms of late stage 6 on the Tam Cummings rubric I would definitely consider stopping those meds.

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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