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My Mother was recently diagnosed with moderately severe dementia. She moved in with me a couple of weeks before Christmas. When she was at her initial appointment with the Neurologist, he put her on Donepezil for her dementia. He started it at5 mg per day and recently increased it to 10. After the increase she started having delusions, paranoia, agitation, tried to run away from the house with her purse and she told everyone I was keeping he prisoner. I finally called the Neurologist to report her new symptoms and he suggested we decrease her dose back down to 5 mg. She is now sweet and thankful and happily attending a day program for socialization with others who have memory problems. I was just wondering if anyone else on this board has ever experienced something similar? I am convinced it was the medicine that caused her rapid decline and symptoms and am wondering if the medicine is really helping at all or if it is possible it is actually hurting her at the 5 mg dose?



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What was she like before she was on the medication?

Doctors love to prescribe meds, but honestly, you should decide if it's making her life any better.
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If she's doing so well on the 5mg dose that's good, isn't it? Are there any other effects worrying you?
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There's really no proof that donepezil really helps dementia patients anyway, so why keep her on something that's not been proven effective?
"They"(whoever they are)say that it's supposed to slow down the progression of the disease,(and that's only in a small percentage of people)but really when you think about it, why prolong the inevitable and intentionally drag out this horrific disease of dementia?
There are no happy endings with dementia, only death, either from the disease itself or complications from it.
My late husband was prescribed donepezil(10 mg.)well into his vascular dementia, and honestly I really didn't notice any positive changes, nor did I notice any side effects. I've read that one should only take it for 6 months as after that it won't do any good anyway.
Sadly there is no magic pill to cure dementia yet, and doctors often just prescribe the only things they know about I believe to give families false hope that their loved one might actually improve when all of us that have been there done that, know that things only continue to get worse and that again there is no happy ending with dementia.
You must now be your mothers advocate so you decide what is best for her in the long run.
I wish you and your mother well.
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lealonnie1 Jan 2023
That is SUCH a true statement FG: why prolong the inevitable and drag out a disease like AD or dementia anyway? To me that's the ultimate cruelty.
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Any medication can cause adverse effects. There is no medication that has been absolutely proven to help dementia! All they can do is attempt to treat the symptoms. And some meds will work for some and not others.
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My mother ALWAYS had the worst possible side effects from medications. After she was dx'ed with dementia, she wasn't prescribed any meds specifically FOR dementia, b/c what meds really work to slow the progression of it anyway? None. Some meds work to treat the symptoms, like Ativan for agitation from Sundowning, which did the trick for mom w/o side effects. But she had side effects from Cymbalta for neuropathy (worsened her dementia something fierce), Scopolamine for bad vertigo (worsened her dementia something fierce), Norco for pain (worsened her dementia something fierce), and so on. So if you're seeing your mother's dementia worsen after a new med is introduced or increased, you can blame the med, call the doc, withdraw the med with approval from the doc, and go from there. It's the only logical thing to do.

The only meds that did NOT produce side effects of note for my mom were Wellbutrin for depression, Ativan for agitation, low doses of Gabapentin for nerve pain (high doses made her dementia worse), and Tramadol for pain.

Best of luck.
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If she is considered severe than no medication is going to have any effect on her cognitivity. If you see no difference from when she wasn't on it and now she is taking it then I would not have her on it.
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All meds have side effects. The best that you can do is monitor her behavior like you are doing.

Doctors usually start off with low doses and only increase the dosage if needed. Continue to report back to them on how your mother is or isn’t responding to the medication.

My mother also was trying to walk out of the front door. Hospice prescribed Seroquel and Ativan and she had good results from taking them.

Every individual will react differently to medication. It’s all trial and error.

Wishing you and your family the best.
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