Dementia diagnosis first post

Try to get into clinical trials, I did for wife , they give all kinds of tests you’d never get

Please go online and read all you can about proper diagnosis procedures. Make certain everything was done to rule out treatable conditions.

I've been wondering about this. Lots of posts mention specific diagnoses for forms of dementia, but I wonder whether it actually makes a difference. My DW got a thorough psychology evaluation in 2021 and a resulting diagnosis of "Alzheimer's". It seems to me that that is a convenient shorthand for a wide range of dementia, because my understanding is that a conclusive diagnosis of Alzheimer's can only be done with an autopsy. DW's primary symptom is profound memory impairment, which leads to impairments of judgment, executive function, etc. She is probably in Stage 4, so I know there will be worsening symptoms in time, especially physiological ones. Not fun, but there isn't much medically that can be done, is there?

Someone mentioned in another discussion that they avoid the terms "dementia" or "Alzheimer's" with their LO. My DW bristles at her psych diagnosis and says those people don't know what they're talking about. I tell her I think "Alzheimer's" is a shorthand, because her symptoms of memory impairment, which she will acknowledge, or at least not push back on, are one property of Alzheimer's. She seems to accept that explanation.

I guess we are lucky In that regard. Our neurologist at the Houston Methodist neurology department was not afraid to issue a written diagnosis of EO Alzheimer's after all other physical problems had been ruled out, and the proper psychometric and brain scans (PET, etc.) were performed. Here was the road map:

1. Presented PCP with list of complaints.

2. PCP ordered blood tests to rule out conditions which can mirror dementia.

3. PCP referred for psychometric testing.

4. Psychometric testing returned diagnosis of 'MCI - suspected Alzheimer's.'

5. With this diagnosis, DW's PCP referred to neurologist.

6. Neurologist ordered a repeat of the blood tests, along with APOE genotype testing, a PET scan, and a 42/40 blood test.

7. With those test results in hand, neurologist issued a written diagnosis of early onset Alzheimer's. This was in writing in support of DW's initial request for temporary leave of absence from work.

The time frame from the initial testing to written diagnosis of Alzheimer's was approximately 4 months. Yes it's true that Alzheimer's cannot be absolutely diagnosed until examination of the brain upon death, but luckily we found an institution and doctors who aren't afraid to call it like they see it.

This topic is of interest to me. I have wondered how much difference it really makes. Here's what I've learned. My husband was initially diagnosed with MCI after pysh testing about 5 years ago. Since then he has had an MRI, EEG, and Cat Scan. Neurologist says that cat scan shows an area of vascular dementia and another smallish area that may be indicative of Alzheimers. I was told that only a PET scan can confirm the ALZ diagnosis. I got the impression that physicians/insurers do not go for a PET scan unless for a real good reason. Facts remain that there is no cure and the symptoms are the symptoms. Only hope is to try to slow down progress. It did sound to me that for those willing to participate in a study a PET scan would probably be required. I've gone back and forth as to whether I should make a big deal out of the PET scan. I keep thinking it is what it is. It won't change anything one way or another. Am i wrong?

My DH is in process of being approved for a PET scan to determine if he as FTD. Our neurologist said a change in the policy will now allow most people to be eligible for a PET scan. Here is a summary from the article and a link for more detailed information. This is new, so if you've looked into PET scans in the past, this is different from what you would have been told. Below is the summary and below is a link to the full article.

CHICAGO, Oct. 13, 2023 — A valuable Alzheimer’s disease diagnostic tool will now be more accessible across the country thanks to a policy change today by the Centers for Medicare & Medicaid Services (CMS). The Alzheimer’s Association applauds CMS for taking action to expand coverage of brain amyloid positron emission tomography (PET) imaging for the diagnosis of Alzheimer’s disease. In issuing its new policy, CMS said the specific details of the coverage will be made by the Medicare Administrative Contractors (MACs). The Alzheimer’s Association urges the MACs to quickly implement broad and equitable coverage for all Medicare beneficiaries.

https://www.alz.org/news/2023/medicare-covers-pet-imaging-alzheimers-diagnosis#:~:text=Alzheimer's%20Association%20Applauds%20CMS%20Decision%20to%20Cover%20PET%20Imaging%20for%20Alzheimer's%20Disease%20Diagnosis&text=CHICAGO%2C%20Oct.,%26%20Medicaid%20Services%20(CMS).

I agree with the several posters who have said it makes little difference what the actual diagnosis is. I am thinking it might make some difference to insurance carriers or in the legal system, but in my day-to-day experience, it's kinda like trying to put out a forest fire. It doesn't matter whether it was caused by lightning or deliberately set. The fact is, if you don't put it out people and property are at risk. Unfortunately, there's no cure, so no way to help the person and those around him or her except to keep the "fire" contained and let it burn itself out.

I'll try! Still figuring out how to do that, so fingers crossed it works! :)

Good Morning Lgb35,

My LO was diagnosed with MCI about 2 years ago. The neurologist at one of the top centers in the USA said that there is really nothing we can do?? We were both in shock. No support at all. Now we await the next appointment at the end of January (there have been 2 others with similar results) to hear what? No medication has been offered except one that he took maybe twice and was so “out of it” we reported the affect it had on him and discontinued it altogether. My late mother-in -law (who passed away from this dreaded disease) took Aricept. When and why is this drug suggested? We have been basically abandoned by the Medical community and I’m not a happy camper. Standard of care in this country no longe has the standards it once did. Please help. Any suggestions will be appreciated. He’s also interested in any clinical trials available. How do we get him in line for something like that?

Happy to have found this discussion group today.

Please reach out to the doctor for some meds to help abate the anger he has. Also, call 911 if you feel threatened. They will take him to an ER and possible admission to get him on the right meds. Please take care.

Check the website clinical trials. gov. They list most of the clinical trails available in the US. You can also google clinical trials for MCI. Most clinical trials are done through a large research/clinic. The criteria for being eligible for a clinical trial can be very difficult to meet. Also ask at your neurologist office about clinical trials. My husband goes to a large research/treatment center for dementia. They do a lot of the clinical trials for dementia in the US. They said he wasn’t eligible for any clinical trials because his dementia was too advanced. He goes every 6 months but all they do is check his progression.

Thank you for your comments and suggestion.

So very much appreciated!

My husband has VD we haven’t done any clinical trials. It definitely is something to consider though.

Oh no I am so sorry. With my husband he had nasty temper and could be verbally abusive to me. Before his diagnosis now it is the opposite. He doesn’t give me any arguments and is pleasant. You would think the nice changes in his personality I would like. I actually don’t like them he just doesn’t have the will to fight with me anymore. Please be careful especially if he is violent. Call 911 if necessary he could hurt you.