Dementia medications

Joan1

I am curious if anybody in this forum uses donepezil and memantine for their loved one. My mom has been on it for 3 years now and not sure if it's working or if I should take her off of it. I should also mention that she has vascular dementia. The donepezil really has bad reviews and comments from people who are actually using it have said that when their loved one was taken off of it they were doing much better. I was actually considered CBD instead of these medications. Has anybody used this? And have you seen any results? Wanted to get some of your thoughts. Thank you.

gampiano

hi Joan,

My husband has ALZ, and has been on donapezil for about 3 years now. It really helped him for the first 2 years, and then the doctor added memantine, which initially caused intestinal issues, but that has subsided. I think the memantine helps with his demeanor, and for a short while his articulation improved. He just had his checkup and the dr. wants him to stay on the meds. Are they still helping? I don't know, but the disease is going to progress no matter what. Be on the lookout for UTIs with your mom. They can cause strange behaviors, weakness and lethargy, and are not east to detect because the effects are also associated with dementia.

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Palmetto Peg

My husband was prescribed Donepezil with the initial 5 mg. dose and then moved up to 10 mg. He never was able to adjust to the side effects of the 10 mg. It kept him from sleeping, sometimes literally all night. The fatigue made his memory loss so much worse, and in addition he had non-stop problems with loose and frequent stools. After one particularly bad night where neither of us slept, I said no more and stopped giving it to him. I have not noticed any additional decline in memory and he is definitely sleeping better. I asked the neurologist about going back to the 5 mg. dose but he didn't feel there would be much, if any, benefit. I think it is different for everyone, but did not help my DH. He has not taken memantine, so I don't know about the benefits of that.

mommyandme (m&m)

My mom was on Memantine for a few years at least. I tried to titrate her off twice when removing meds to lessen her pill burden. What I noticed both times was her being less able to follow simple directions. When instructing her to walk and “move your foot forward” while I put mild pressure on her heel, that was too difficult to comprehend. I titrated the Memantine back up to her normal dosage and she was able to follow that direction more easily or directions equal to that both times. It was a very slight observation but meant a lot for our daily life. Since she started Memantine prior to my being her 24/7 caregiver or even living in the same state, I’m not sure of any initial help it provided. I do believe it helped with those easily overlooked things during our journey. When she was eventually bedridden I took her off of it thinking there weren’t many directions to follow anymore. Now thinking back maybe I should have kept it on board. Could she have used utensils longer or fed herself longer, I’ll never know.

Just my two cents. BTW, my mom had Alzheimer’s.

SusanB-dil

Another here - MIL is on Memantine and Donezepil, and a couple others. The cocktail she is on seems to be keeping her stable for a while, as opposed to going 'down another step', at least not very quickly. (for now.) She has Alz and Vasc. She does not seem to really have any side effects from either. For vascular, and to minimize risk of another stroke, also Atorvastatin.

Cosmic

Ditto on SusanB-dil.

Wife has been on memantine twice daily, donepezil at bedtime, Atorvastatin at bedtime and others for almost 6 years now. No side effects and the combination seems to be holding her Az at bay or at least slowing progress. Hate to experiment at this point, might be opening up a bag you can't close.

Caro_Lynne

My LO is on risperidone and klonopin (among other meds for hbp, seizures and cholesterol). So far this cocktail is keeping him manageable, meaning non-combative and not aggressive. He still hallucinates and asks where Caro is (me) all the time.

About a month or so ago I started giving him CBD+THC+melotonin gummies; they have been a blessing! He sleeps through the night, ergo, I get some sleep! His doctors have all said to me that if it works, they have no problem.

Quilting brings calm

My mom is on donepizel. Started at 5 to adjust. She’s now at the therapeutic does of 10. The purpose is to slow down symptoms, but the disease still progresses behind the scenes. I’m not aware of mom having any side affects. I’m not sure it’s helping, but it isn’t hurting. She was on a generic Exelon patch a few years ago, but her insurance stopped paying for it. That wasn’t doing anything one way or the other anyway.

Joan1

Thank you for your response. It's so hard because you don't know if it's working or not. And don't want it to do more damage.

AlzWife2023

My husband’s doctor just prescribed 5 mg of Donezepil. He’s got Alzheimer’s, moderate dementia stage. He has not started taking the pills yet but the doctor described their action as helping the currently healthy, functioning brain cells to work better; it won’t stop brain cell death. He said to expect a slight uptick if it works (2 points on the mini-mental) and then the rate of decline remains the same; you’re just starting from a higher point of functioning. He said the side effects can be really bad (stomach upset & muscle cramps) and the benefits do not outweigh the side effects so we’ll stop the medication if there are side effects. He also said there is some evidence of a mortality benefit at about 5 years.

AlzWife2023

PS doc said that Donezepil can interfere with sleep so take in the morning after breakfast (on full stomach to reduce stomach effects).

Joan1

Have you heard of anybody using CBD for dementia treatment? And if they have seen any success?

SDianeL

My DH has been on Memantine for 6 months. Although I haven't seen any difference, I really have no way to know because he's declining. The Neurologist said it should help his attention. So I'm going to leave him on it. He's not having any side effects. I just asked the doctor for medication for my DH's anger & agitation and he's having hallucinations at night. He can't distinguish between dreams & reality. She prescribed low dose Risperidone. He will start on that this week. We'll see how it goes. I was concerned about the side effects but this forum helped me realize the benefits of a low dose should outweigh the risk.