Dementia diagnosis first post
My DH was diagnosed with MCI and we were told he had Dementia. How can we get a more accurate diagnosis? His neurologist said there is not currently a way to diagnose whether he has Alzheimer’s, that is covered by Medicare. Does anyone know something I can do?
Thank you
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Try to get into clinical trials, I did for wife , they give all kinds of tests you’d never get
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My DH was diagnosed with MCI concerning Alzheimer's in2021. He started on Aricept. The lobes of his brain that were affected (from the MRI) were consistent with Alzheimer's. The 2 test our Neurologists told us to test for Alzheimer's are a scan (that is not covered by insurance) and a spinal tap.
We opted not to put him through any more test because knowing wouldn't change the outcome and it really didn't matter to us. We do call it Alzheimer's, however, since the largest % of dementia is Alzheimer's and he has a family history of it.
You are in the right place to get the support you need.
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Please go online and read all you can about proper diagnosis procedures. Make certain everything was done to rule out treatable conditions.
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I was able to get my husband in with a neuropsychologist that did a lot of cognitive testing, and then forwarded the results to the neurologist. That, plus the results of the scan the neurologist ordered helped us with a diagnosis. The neuropsych testing was covered by Medicare.
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Thank you all. I am very worried about the future. Recently my husband has been violent with me and I am devastated. I am not equipped to handle this.
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@Dragonflygirl i’m sorry that you have to be here, but glad you found this place.
I am only going to comment on the above post for the moment.
If your husband is being violent toward you, you need to call 911 immediately. Do not put this off or excuse his current behavior. Have him taken to the hospital, preferring one(if at all possible) with a geripsych unit. Do not allow yourself to be injured, especially by thinking that your husband would never do that to you. His reasoning is now altered. Always carry a fully charged cellphone on your person. Have a room that has an emergency exit(window, etc.) where you can lock yourself in.
Your priority is to keep yourself safe first right now.
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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.
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My DH has the diagnosis of MCI. We are still working so testing is covered under my insurance. We had had the neuropsychological testing which supported the atrophy that showed on the MRI, spinal tap which showed borderline for Alzheimer’s. Countless blood tests to rule out anything treatable. They don’t know what the “cause” is as he is presenting atypically for everything. They are thinking either Alzheimer’s or FTD but not clear at this point. They have confirmed it is a degenerative neurological disease and to get things in order. He is on aricept and has been for 3 years now. I guess as he declines they might have a better idea but the path is the same either way. The heartbreaking part now is DH is very aware of what is happening and has been asking me for something to “fix his brain”
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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.
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Last year DW got a jury summons. You can imagine how she would be useless as a juror. I contacted DW's PCP and asked her to fill out an official exclusal form, which she did, the form was accepted, and DW was excused. I think DW was elated until she read what the doctor wrote for the reason: "Alzheimer's/Dementia".
DW was insensed, because she doesn't believe the diagnosis. I asked her if she agreed she has some memory problems, and she did. So I told her I thought "Alzheimer's" was a lazy use of the term, because memory impairment is one of the symtoms. In any case, I said, you're excused from jury duty, and that's what you wanted.
Now, if only I could purge all copies and images of that form. Any time she comes across one in her mountain of desk clutter, she gets upset about the diagnosis, and I have to explain again.
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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?
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That's pretty much where I ended up. There are clinical trials, but they seem to be for patients in earlier stages of the disease, and they often require lots of checkups and possible side-effects. I guess you could consider it fatalistic or defeatist, but, as you say, "the symptoms are the symptoms." So DW is on donepezil (Aracept) and memantine, and it's impossible to know whether they're actually having any effect.
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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.
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Violence is not acceptable regardless of the condition causing it. You need to contact his doctor and relay the information so that meds can be prescribed.
At the very least you need to be emotionally prepared to call 911 if it occurs again. Explain his condition and they will likely take him to ER with a potential admission to a ward for monitoring and testing for what meds can calm him.
You have to take care of yourself.
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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.
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LindaLouise, what you posted about new guidelines for ordering a PET scan for diagnosis is very exciting. Can you repost in its own thread so that all members can be aware of it?
Iris
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I'll try! Still figuring out how to do that, so fingers crossed it works! :)
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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.
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Thank you. Very valuable information to take to the next visit to the neurologist. He has had one PET scan so far. That is how they were able to make the diagnosis of MCI/Alzheimer’s disease. Possibly he may qualify for the new FDA drug that slows the plaque build up in his brain.
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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.
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I have found we have to be our own best advocates. Ask them about trying aricept. Ask about any trials that he might qualify for. We are going to the Cleveland Clinic and they have a lot of information about trials.
hang in there
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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.
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Is it fatalistic to assume there's nothing medical science can do for a PWD? Rather than hold out hope for a vague miracle cure, we just have to continue to do the best we can to support our PWD. It ain't easy.
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Thank you for your comments and suggestion.
So very much appreciated!
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Again, I no longer post a lot, but I'll have a say here. Many people say it doesn't matter what type of dementia one has because they are all so similar. There is (for the most part) a lot of truth in that. A diagnosis can be changed, and that is not uncommon. I always think of a diagnosis as a "best guess" from those doing the diagnosis One reason a correct diagnosis is preferred is because there are medications that should not be used with certain types of dementia. When they are used like that, the medications can have pretty bad effects on certain types of dementia, while they are really good with most other types. For this reason, if your LO is given a medication, then seems to have an undesired effect, you should let the doctor know about it right away.
For those of you who are new to the forum, welcome. You have found a great resource.
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My husband has VD we haven’t done any clinical trials. It definitely is something to consider though.
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Honestly this group is fantastic. My husband was diagnosed year ago with VD. I have gotten so much good information. Someone on here suggested keeping notebook. With any changes in his condition. It really helps when I go to the doctor with him.
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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.
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My husband has VD and he is aware also. When he was diagnosed year ago. We came home from the doctor. He was looking up the type of dementia he had. Then he said to me that it is progressive disease. I told him that I knew that. Then he said Angie I am never going to get better. I said no you won’t but they can slow the progression of the disease. Broke my heart for him,
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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