What am I missing?

Has she had any brain scans or a lumbar puncture? My husband's original diagnosis in 2019 was mild cognitive impairment and the neurologist explained that there was no way to predict how long that stage would last before moving to Alzheimer's/dementia. He's now 92 and although an MRI scan last year was "terrible" according to a hospitalist, he's declining slowly in some areas, but his short term memory is cartoonishly short. The hospitalist reminded me that no two journeys are the same: each patient had his or her own stewpot of symptoms so you just have to expect a new ingredient to be added at some random time and be ready to adapt. She was not an MD, but an APRN and is the most compassionate and helpful clinician we've encountered since his original diagnosis.

Tagging onto my last comment, my husband was scheduled to have a neuro-psych exam, but 10 minutes in he shut it down, saying the questions were insulting. When's I later asked his neurologist whether the exam was used more for research than for treatment possibilities, he got a little tongue tied. "Well, both" he said. I think it's more the former, but I've become fairly cynical during these last few years, so I may not be fair.

She has had two MRIs. Neurologists couldn't see any obvious abnormalcies. The second neurologist told us to
schedule a visit, if serious changes occurred.

@harleyshaw For all of the confusion with this disease, named or un-named, you seem to be right on top of things! I just thought of someone who may be helpful to you; have you seen a geriatrician? Their medical specialty is older adults. Here is a good description of what they do.
https://dhs.lacounty.gov/harbor-ucla-medical-center/our-services/primary-care/geriatrics/#:~:text=In%20addition%20to%20general%20primary,care%20planning%2C%20caregiver%20support%2C%20and
Your local hospital might have a few names for you, or you could ask the local Medical Society. Can you do some research today and call on Monday?

Thanks for the suggestion. I'll see what I can find out.

I have also wondered about this…my husband is scheduled for a neuropsych exam in January. His last was 2 years ago, when the diagnosis was MCI. I feel the next diagnosis will be different and he will feel depressed…wondering if we should cancel, since I’m not sure anything helpful to him as a patient will come of it. Would love to think something hopeful could come of the appointment, but call me sadly skeptical. Thank you for your comments!

They may not have diagnosed exactly what she has, but they have eliminated some possibilities in order to prescribe medications.

My husband did have a neuro-psych eval but it was after I had done my own research on the different types of dementias. He was diagnosed with frontal-temporal dementias. However, that didn’t seem to line up with the myriad of symptoms I was seeing in him. I called the doctor & (acknowledging that she was the expert, not me) suggested it looked more like “something called Lewy Body Dementia”. She replied that she had observed that as well & would update the diagnosis to reflect that he had TWO forms of dementia.

Being around our loved ones 24/7 we are in a much better position to observe the wide range of symptoms than a practitioner who only sees them for a short period of time.

There are some excellent & very readable books that detail the differences in the 11+ types of dementias. They include symptom lists. And more importantly also stress what is not a symptom of specific dementias. At the moment I can’t remember the name of some of the books. Others in this group will probably know.

Unfortunately the older we get the less inclined some practitioners are to push for a diagnosis. But regardless of age and how few/many years we have left, we are all entitled to the best quality of life possible, for ourselves & our loved ones.

It’s never too late to do a bit of research & advocate based on what you think the diagnosis might be. For my husband there are some medications that absolutely have to be avoided with LBD. And there are others that just aren’t very effective.

All my decisions focus on quality of life which makes the choices easier for me at this point. We are a 5 hr round trip to medical services & that’s not always pleasant for my husband. So that is factored in as well.

Thanks for the thoughts and suggestions. I guess it's normal to want to just do something. At present, our CNP is the most concerned and responsive medical person we have. Also the closest. She has commented upon a similarity to Lewy Body .
Like you, the drive to doctors is long, so we commit to speculative appointments with specialists with increasing caution.

The way I got a diagnosis for my husband was my writing a journal with things that my husband had said and done for several weeks. It was important to me for him to get an actual diagnosis because I was concerned about him driving. If you sat with my husband, it would be easy for you to think there was nothing wrong, but I knew he had a serious disease. Sometimes those tests that are given by primary care doctors do not show how ill someone really is. His primary care doctor said he had mild cognitive impairment, which was not accurate. Luckily, she was OK with him seeing a neurologist and she gave us a name. The neurologist asked more questions that made it clear that he was having big deficits. Like what year is this? My husband thought it was 1975. His questions along with my journaling made it clear to the neurologist that he had Alzheimer's. He has been devastated that he can't drive, and I have been devastated that I have to do all of the driving, but it is what we have to do.

Driving ended for my wife when she was unable to answer questions required to renew her license. It is still an issue with her, but the time had come. She has compensated by giving me detailed instructions. I can handle that. The journal is a good idea.