What should be expected of a neurologist treating Alzheimer’s?

VictorKach, sounds like we are in the same boat with a similar plan, enjoy each day as it comes, keep her safe and comfortable. My wife also has moderate Alzheimers disease and was initially diagnosed back in 2015. We've ben together over 57 years, so I cherish each day with her and because the future scares me, I don't look to the future.

My wife has moderate to severe early onset Alzheimer's. She also takes Aricept. In addition, she takes Memantine twice a day. It is supposed to minimize symptoms but neither drug slows down the cellular destruction that is going on in the brain and neither drug has a strong success rate to minimize symptoms ( varies per person). I do think that it helps a bit with some of the symptoms but I agree that loving them and caring for them through this grieving disease is all that we can do. My strength is found in Christ and He keeps my wife calm. He is our rock and gives us both the strength to carry on a day at a time. I try to focus what a blessing it is to be able to take care of her, rather than having to put her in a nursing home. So far, God has made a way for me to be her full time care giver. I'm so thankful. Hang in there folks and try to get some rest. As we all know, this is an exhausting disease for the person that has it and the caregivers that support them. God bless you guys.

Hi Larry- What were the Namenda side effects? My husband has used the rivastigmine transdermal patch for several years and it's very good for him, I think. APRN at geriatric practice suggested adding Namenda, which we've done and I wonder if it's doing anything more than adding pills to the pill box. Since they won't "make him better" it's impossible to know if it's worth it. He sees a geriatrician twice yearly (MD, then APRN in the practice 6 months later), same with neurologist. He is almost 92, was diagnosed with MCI in 2019.

Hey there, Cranky -- My wife's symptoms were increased confusion and nausea, which caused her to seriously reduce her food / fluid intake -- a biggie for her because she's underweight, and doesn't eat or drink much to begin with. Since stopping it, she's been eating better. Of course over time, and as expected, the mentation issues have continued to progress.

Your hubby is fortunate that the MCI started as he approached 90. My wife's began at 75 (she's 80 now).

All the best!

/LarryG

I agree that people are not seen often by neurologists. Ours was able to give my husband a couple meds that have improved his memory and alertness. He seemed to care more this last time. Be sure to go in with your loved one and have a list of questions.

We see my husband's neurologist every 3 to 4 months. The neurologist gets us updated on where we are at. I ask lots of questions about game plans and he tells me what is possible.

My husband has Alzheimer's, 2 years in, still at Mild Cognitive Impairment. He gets the quick test of drawing the clock, etc. to be sure he is still at MCI. This is important to know because, at this stage, he still qualifies for certain medications and studies.

Lecanemab and Donanemab are our main goals. Lecanemab infusions we will do first until Donanemab comes out. My husband does not have APOE4 (genetic test, ordered by your neurologist) so he can take the Lecanemab. Lecanemab is an infusion 2x monthly. Medicare cut the cost by 80% so we decided to do it. The wait list is long as there is a shortage of staff and facilities. However, we were told by our neurologist that an injection is coming out soon which will bypass the long wait to get in line for the infusions. We are only going to take it until Donanemab comes out at the end of the year (hopefully affordable because Medicare takes a long time to process getting the cost down.) Donanemab has been showing great results in studies so we are keeping our fingers crossed that we will still be in MCI stage when it becomes available. We are hoping Lecanemab infusions will buy us the time we need to get to the Donanemab treatment. That said, the wheels turn very slowly and we are waiting, waiting, waiting to get the infusions,

My husband had an MRI ordered at his last visit to see if he is still at Mild Cognitive Impairment stage.
It is impossible to get a call returned from our neurologist's office for the result (as was the case in MN as well as AZ). Regardless, it is important to have regular visits to a neurologist at this stage because there are still treatments to try and discussions to have.

Two things we are doing at home, both inexpensive, easy to do, and okayed by our neurologist:
The first one is through MIT. Our neurologist said he just returned from a large conference in Amsterdam and the MIT researchers who were involved in this study spoke with him about this. My husband has been doing this program on his IPad for about 5 months and during his last neurology appointment, he scored 20% higher on his quick assessment that they do every visit. To read about it see articles referring to "MIT, 40 Hz brainwave treatment". It is a light and sound program that works on an IPad. My husband pays a small fee to do this program which gets donated to the Alzheimer's Association. (You may be able to do it for free.) Your neurologist should be familiar with this program.

The second thing we ran by our neurologist is the study out of UC Irvine which ties scents to improving memory, Articles about this are from UCI News (most recently, August 1, 2023), Boston University, Neuroscience News, Scientific American, NPR, Oxford Academic, etc.

The idea is that you use an infuser and essential oils (the study specifies what infuser and oils they used) which improves memory. How and why it works, you can easily read about. I was highly skeptical until I read the whole original research study. ("Overnight olfactory enrichment using an odorant diffuser improves memory and modifies the uncinate fasciculus in older adults", Neuroscience, July 2023)
The participants in the study had Alzheimer's, Parkinson's and just normal aging memory loss. I do this, as well as my husband, as my memory is not as lovely as it used to be. We have the infuser on while we sleep.

I am not advocating that anyone do these specific things, What I am saying is that if your loved one is still in the MCI stage, there are reasons to still be seeing the neurologist. If the neurologist says come back in six months, or more, you can still call to schedule an appointment when you have questions. The MCI is a precious stage and new treatments are coming out which are very worth considering.

Just as an aside ... I told the neurologist that the results of the Donenemab look so promising that I am afraid no one will want to be involved in placebo studies anymore and research into even better treatments could come to a halt. He said this keeps him up at night.

My husband died with Parkinson's dementia.My sister has Alzheimers.(ages 80 aat death and she is 80 now.) My husband used the redlight therapy, the Vielight 810. My sister is using it now. You can get all but 20 percent of your money returned after using it 6 months if it doesn't help. My brother in law who takes care of my sister at home says it is helping her. I know it helped my husband.