Has anyone seen benefits or experienced serious effects from Alzheimer’s drugs?

I know your question Is about drugs, but you sounded interested in the replies of the people who mentioned diet. Concerning Mild Cognitive Impairment, there is good evidence in this area: you can Google the MIND Diet and find some articles about it. It is similar to the DASH diet and the Mediterranean Diet, but with a few differences. Some versions suggest including a small amount of alcohol, but that appears not to be necessary. It is not expensive to do, and it's a good diet for all adults--and MUCH less complicated than the Bredesen diet. I see a geriatric psychiatrist, and he is a strong proponent of this diet. I understand our husband is past Mild Cognitive Impairment, but it is probably still worth a try at very little cost for those involved!

Like with all drugs they test against a control group.

The drugs do help some people.

My mom has moderate cognitive decline and is on Aricept and Memantine and the latter in particular seemed to really help her cognition and her mood. It didn’t just slow the progression but she actually improved.

However, it has been a year now (on the Memantine, many years on the Aricept) and she is starting to slide again. Maybe the dosage should be upped. We will discuss with her neurologist. She has no side effects as far as we can tell. In fact, you can tell when she has NOT taken her meds.

For some people there is definitely value.

By the way, what seems like a slow decline to you may be pretty drastic. What would someone who hasn’t seen him for 5 years think? With my own mom I see writings that she did just a few years ago and there is no way she could ever do that now. It doesn’t seem that bad until you do direct comparisons like that.

My BIL was put on Namzaric from the very first sign of dementia and its been over 6yrs now he still has most of his memory but his short term memory is gone and that was gone before the drug.

The doctor said we will give him a fighting chance this drug has.

Prayers

Mapotter: My late sister in law, who suffered from Alzheimer's saw no benefit from Aricept. Cause of death was the Novel Coronavirus.

My understanding is that Aricept, if successful, slows the symptoms of dementia, but not the dementia itself. Someone else may be able to correct me.

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.

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.

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.

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.

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…

My wife was on a clinical trial for donanemab (Lilly). I'm told 30% of the patients develope ARIAs (brain swelling); most are minor but hers was extremely severe. It's treatable with an IV antibiotic but that didn't help in her case. She also had a stroke and has now been in a skilled nursing facility for six months. Similar drugs have had equally common side effects. So -- if your LO is enrolled in a trial it is **absolutely imperative** that they get an MRI at least once a month so they can catch the brain swelling before it gets serious.

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.

My younger brother was just diagnosed with Alzheimer’s disease. He has been experiencing memory issues for a while.

His doctor has placed him on Namenda. I certainly hope that it will help him. He’s only 62 years old.

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.

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.

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.

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.

there are newer drugs than Aricept.
I have mixed feelings about the drugs that are supposed to slow the progression.
At some point they will not be as effective.
At what point are you willing to discontinue a drug on the slight chance that it still may be beneficial. So my guess is there are a LOT of people on these meds and they are no longer working but no one wants to take the chance to take their LO off them. This is a GREAT cash cow for the drug companies.
Did I have my Husband on Aricept...You bet I did. Ya know..just in case.
He was prescribed Namenda but that drug had to be gradually started and with each increase of dose he had a personality change. So with the doctors ok I began taking him off the drug. Would it have helped? I will never know.