Early stages of the disease

jspeed · January 15

Hello, I am hopeful these discussions can offer me insight and a community to share our journey.

My husband is 54 years old and has been experiencing cognitive decline over the past few years. In the Spring of 2025 he had an MRI and a CT scan of his brain. All appeared normal. His blood work showed his p-tau 181 levels were elevated. His was 1.02 with the reference range saying he should be between 0.00-.95.

He has been struggled or forgetting Items such as:

Going back multiple times to our old home after we moved last year.

Forgetting our new address after 1 year of living here.

Not knowing where our daughter is after multiple conversations about our daughters schedule. And this has occurred more than 3 times.

Struggling to find words. Often says put that over there.

Has recently gotten lost driving home.

Can't fall asleep until 5:00 a.m. and then sleeps until 12:00 or later.

Has conversations with people and has no recollection of it. This is just a few of many items he is struggling with.

He also had a NeuroPhych test last Spring and that showed nothing. They said he was showing normal signs of aging and anxiety. He has had the IQ of a genius and so he is now showing in the normal range and they think this is "normal" for him. But it's not.

The only information we received from his neurologist last Spring was that he needed to quit smoking. She also said there is no FDA approved medication for treating p-tau levels. Only beta amyloids. And his beta amyloids were fine.

We know something is really wrong but have received no guidance or diagnosis. Not even Mild Cognitive Impairment.

Any suggestions on what to do when we are given nothing from the professionals?

Thank you in advance.

Call me Gram · January 15

It took my DH a couple years to get a diagnosis of "amnestic MCI w/concern for Alzheimer's" … after seeing three neurologists. The first neurologist was rude and dismissive, and the second said DH was experiencing normal aging.

Over the 2 years, I documented DH's symptoms, typing them and dating them like a journal. So, before our meeting with the third neurologist, I used ChatGPT to help me organize my notes. ChatGPT pulled out the most impactful symptoms and helped me word them in clinical terms. Having the entries dated helped to identify a progression as well.

SDianeL · January 15

I would get a second opinion. Is there a medical college or research center near you with a memory care group? I would also do what CallmeGram did and keep a list of his behaviors and take or send it to the Neurologist. At first I sent it monthly and then as the disease progressed I sent it every 2 weeks. My DH was originally diagnosed with MCI, dementia, probably vascular. 18 months later after I sent the Neurologist his behaviors, she looked at his last CT Scan and replied that “they were consistent with Alzheimer’s-Posterior Cortical Atrophy.”

Iris L. · January 15

In the early stages those tests are used to "rule out" medical and treatable causes of cognitive decline. Has he had extensive neurocognitive testing to determine his cognition? A decline in the expected level of performance will enable more specific testing.

Is he able to work? Can you review his latest employee review for warnings of poor performance?

There are many serious csuses of cognitive decline besides Alzheimer's Disease. It can take some time for the diagnostic process. Continue to observe and take notes as suggested above. Review any medications for cognitive side effects.

Please keep us advised of your progress.

Iris

tucson anne · January 16

There is literature about people with high cognitive reserve being difficult to test (talking about neuropsych tests ) for dementia because those tests are normed to average people. My husband, Phd molecular biologist, complained about his memory for quite a few years when he was testing as normal (He was in that nationwide study ADRC that gave him a battery of cognitive tests every year, dating back to 2004). He was still testing normal in 2017 when he had short term memory issues, executive functioning issues and twice backed his car into a closed garage door! He wasn't officially diagnosed with Alzheimers until 2022 when PET scans for the study showed amelyoid plaques. Keep pursuing a diagnosis.

jspeed · January 16

Thank you everyone. I have been documenting his symptoms and also brought those to his neurologists attention. The only thing she could suggest was change his life style and bad habits.

We own are own business so he doesn't have employee reviews. However, our staff are noticing his inability to remember conversations with them and he is forgetting promises he has made to clients.

I guess we just keep documenting and plugging along.

Thanks for your insight.

jgreen · January 16

Hi @jspeed

Welcome and so sorry you find yourself here with us. Glad you posed the question.

Dr. Tam Cummings has a number of tools on her website. One is a behavioral assessment that I will attach for you. This list of behaviors might be useful as you document the changes you are noticing with your DH. Several on this site have mentioned that they document what they see and share with LO’s doctor. Remember - the doctor might see them for 15 minutes every 3-6 months and you are there 24/7/365! You are truly the expert and advocate for your LO. Good for you to speak out!

Dementia Behavioral Assessment.pdf

Hugs! 💝

Iris L. · January 16

It might be time to make a plan about the business. Staff and clients are noticing what you are observing. Doctors are often vague at this stage.

Iris

MaryMN · January 16

Totally agree with making a plan for the business if you haven't already. My DH also owned his own business. Selling a business can be very time consuming. By the time our sale finally closed, DH was unable to provide the training and help to make a smooth transition.

SDianeL · January 17

if a Neurologist said change his lifestyle and bad habits I would find another Neurologist.

harshedbuzz · January 17

https://alzconnected.org/discussion/comment/263689#Comment_263689

I would say that depends on the "habits".

I totally agree if they're suggesting crossword puzzles and the like.

Dad's habit was alcohol. His neurologist would have been remiss if he hadn't advised against it. The same might be said of certain recreational drugs.

HLynn · January 18

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Lgb35 · January 18

it took us 4 years to get a diagnosis of FTD Semantic variant. I would go to another neurologist. We have been to 3. We ended up driving to Cleveland Clinic which is almost 5 hours one way. He had an Amyloid PET and a FDG PET. The Amyloid PET can diagnose or exclude Alzheimer’s. DH had had a yearly neuropsych evaluation to compare decline. Keep pushing! Something is going on.

Early stages of the disease

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