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.
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.
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.
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.
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.
His doctor has placed him on Namenda. I certainly hope that it will help him. He’s only 62 years old.
I am so sorry to hear this.
My Husband was 63 when he was diagnosed.
It it a long difficult road as you well know.
I hope he has no issues with the Namenda and it works as well as it can for him.
This conversation took place probably 15 years ago and I never forgot it. Maybe the newer drugs are more promising. I really hope so.
also rexulti. The only improvement I see
now with the rexulti is that he is more
calm and sleeps better. Less agitation
and anger.
The doctor said we will give him a fighting chance this drug has.
Prayers
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.