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My husband was just diagnosed with “Mild Alzheimer’s Dementia with vascular contributing factors.” He had been on Aricept for a year in 2020, but he saw no benefit since his cognitive issues got worse. (Plus he didn’t care for the neurologist so he stopped seeing her.)



Has anyone/anyone’s LO taken any of the new drugs for Alzheimer’s with any benefits or issues? I am not sure how anyone can test if it does what it is supposed to — slow the progression — since everyone is different and they may have well had a slow progression anyway… But… I do worry about the serious side effects…



My husband’s progression appears to be slow to me. I have seen little changes over the past 3 years. He has gone from being diagnosed with MCI in 2020 to having Mild Alzheimer’s today (appears to be stage 4 (out of 7)). But it has been very gradual. We will see what happens in the next year when he goes for the testing again.

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Mom was on Memantine and Rivastigmine for over a decade. Memantine started causing UTI's the last several years.

Hard to say if the drugs worked.

The thing that definitely worked was diet. I got about a 25% improvement via diet.

Unprocessed foods (nothing with an ingredient list), low to no sugar,

Breakfast was usually: eggs, bacon, gluten free toast with butter, fruit including blueberries

Lunch was: protein, veggie, carb (rice, white potato or sweet potato)

Dinner was: same as lunch

Treats: occasional ice cream

Mom is a celiac and her caregivers were giving her a lot of sweet processed gluten free junk food. Dad passed and I took charge of Mom. The switch to the above was a dramatic difference.

Eating junk food/ processed foods: Mom sat like a blob and did not talk

Eating unprocessed foods (see above), Mom talked, walked and was engaged.
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Mapotter Dec 22, 2023
Great information! I do try to fix healthy meals. I have always been the one to buy organic and unprocessed food. I am not always perfect, though. My husband is okay fixing his own breakfast, much like you suggested. I am noticing he is not really eating lunch unless he sees me eat, or I happen to fix him something. (I don’t always eat lunch or much for lunch.) So I have to start being mindful that he is in fact eating…
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A neurologist I knew from where I once worked said these drugs are prescribed more for the family and not for the patient themselves. He said these drugs do little if anything to improve cognitive skills but many families need to feel everything was done.

This conversation took place probably 15 years ago and I never forgot it. Maybe the newer drugs are more promising. I really hope so.
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My step-mother was on generic Aricept, worked for awhile, then she got much worse. She no longer takes it.

We do not have her tested there is no reason to, it means nothing unless the person has Parkinson's. We can tell where she is at by observing her.

No magic pill developed yet.
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There is really nothing definitive yet on the NEW drugs other than that they THINK they work and they THINK for some dementias and not others (don't know which) and they THINK only for those dementias caught early (not meaning early onset, but meaning you start the meds soon after any indications.

The worst of the side effects is the fear of a brain bleed. IN all honesty, until these are proving I would not be taking anything with that side effect. That would just be too much risk for something VERY expensive and so far, to my mind, very unproven. I do know medicare is covering some. Don't know which and don't know for how much of the cost.

I am sorry to hear of this diagnosis. As you already observed, MA, you can't prove a negative. You can't prove a positive when you cannot measure it, and given a diagnosis like this people do progress irratically and not like another. It is very hard to measure outcome on medications like this with an illness like dementia, where every patient is as individual as his or her own thumbprint.
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These drugs seem useless to me. My mom is not on them. Dementia is already a long, hard road so I would do nothing to extend that.
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Mapotter Dec 22, 2023
I am of that same mindset….
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My friend was diagnosed with dementia at age 55. Aricept was offered by neurologist but also said we have nothing much to offer. He did try the Bredeson protocol also, but one has to take a ton of supplements , exercise etc. He was able to follow it but neuro testing showed no improvement. The one thing he did notice was the Medium Chain Triglycerides being helpful for sleep…
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I think that it’s virtually impossible to tell whether or not long term drugs like Aricept and Memorix do anything at all.. Alzheimer’s will progress at rates depending on the victim no matter what steps are taken. How could you possibly tell how it might have gone with or without the drug.
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Mapotter Jan 4, 2024
I agree.
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Mom was put on Namenda and had an immediate downturn. She had vascular dementia, not AZ. Clemastine is a safe neuroprotective drug. It is in clinical trials for AZ among other conditions. There is evidence that it can slow some types of dementia. The risk of side effects is much lower than anything else out there or in trials. It is not a new drug; it is a new use for a first generation antihistamine that passes into the brain and stimulates regenerative processes. It won't help everyone but no drug does. Another possibility is CerefolinNAC. It is a neutraceutical that can slow some types of cognitive impairment. Husband sounds like he might be beyond that.
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My husband was diagnosed 7 years ago. The disease has been very slow progressing. He is 85, doesn’t hear well, & has little comprehension. He was taking memantine, 2 years ago donpezil added . He was sleeping all the time and his legs ached. I went to a seminar led by a doctor that was not convinced that medication did much good at this point. Also a nurse in a memory care unit told me, when patients come in they take them off of all medication and then add if patient as anxiety. My husband is at home and has been off of meds for almost a year. No more pain, and is able to walk in the neighborhood. The memory decline has not changed. Gave up on the neurologist. Primary physician thinks it was the right decision for my husband.
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Cheeky79 Dec 30, 2023
My husband takes the same meds and
also rexulti. The only improvement I see
now with the rexulti is that he is more
calm and sleeps better. Less agitation
and anger.
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Aricept showed no improvement for my mom. She was no better on or off of it. The memantine is the first one she was prescribed I have seen no slowing of the disease. Its all a deal shoot. None are going to stop anything, hopefully try to slow it. Side effects are scary. Its all in the genes as to the help one receives from meds.
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