Should we proceed with testing

staval · April 20

my husband has mci(22 score on Moca). We went to neurophysiologist and he ordered a in-depth test.

My husband has severe sleep apnea that took almost a year to correct. He was having 36 episodes per night. The neuro wants the test because of that and his low score.
my husband feels conflicted to get a diagnosis it just seems so overwhelming.

We have all our estate planning documents made so that won’t matter. My husband just feels if there is no cure what are we chasing.

Would like some thoughts on this because Iam sure we are not the only people.

Btw his brain scan shows mild vascular ischemia all other tests are normal.

Neurologist doesn’t believe this is vascular dementia.

Timmyd · April 20

I hope you are doing well. The first time the doctor indicated MCI to us it was overwhelming. My DW was only 57 at the time and otherwise very healthy, so we followed through with every available test.

I would ask if the doctor has plans to recommend treatment plan based only upon the results neuropsyc testing. For us, the neuropsyc testing only confirmed there was a problem. They could not do a specific diagnosis or treatment plan without other more invasive/expensive medical testing. You may need to think of this not as a just one test, but next step on a path of testing you have decided to travel.

For us, following the neuropsyc testing the doctor was very clear that there was a problem and all of the reversible / curable causes have been ruled out. The next test (PET scan $$$) was to just narrow down which of the list of bad things it was. Given the age of my DW, it was important for us to get the most specific diagnosis available. These are very personal decisions, my only advice is to make as informed a decision as possible.

staval · April 20

thank you for your response. I appreciate insight from someone who has already gone through this. I need the point of view and you made good piont

Carl46 · April 20

Untreated sleep apnea can cause dementia. OTOH I have sleep apnea that is substantially more severe than your husband's and was able to perform skilled work for 20 years after I got it under control with CPAP. I retired at 72 to care for my wife but otherwise could have continued working.

There are tests, such as spinal tap, that can confirm or rule out Alzheimer's. In your shoes, I think I would want to know whether he has a progressive condition or if MCI is as bad as it is going to be. I think I would as the doctor if he is going to be able to answer that question.

staval · April 21

thank you for your response. My husband is 71 and just started bipap machine.

Iris L. · April 21

Severe sleep apnea needs to be treated consistently. Is he using the mask correctly? Severe sleep apnea can cause loss of brain function. It is possible to have both sleep apnea and Alzheimer's Disease. He might be eligible for the new drugs.

Iris

jfkoc · April 21

I suggest you go online to google dementia diagnosis protocol to make certain all steps have been taken and to better understand all of it. There are several good sites.

What "in depth" tests and for what purpose?

Good for you for getting your legal and financial documents in order.

Anna2022 · April 21

Hello and welcome, @staval

You've found a great supportive community! I have learned so much from all participants in these discussions.

@jfkoc has a great suggestion to google "dementia diagnosis protocol" to get a general outline of testing options. It's also good to remember that if you've seen one person with dementia, you've seen one person with dementia. I have learned that diagnosis is a process, not an event.

My DH refused testing for the first years after I noticed significant symptoms around memory loss. He refused, saying that there was nothing wrong with him and he felt fine. After much argument and disagreement (those were horrible days), he finally agreed to testing. We consulted with a geriatric psychiatrist who specializes in dementia, recommended by our PCP. His MOCA was also scored a 22/30. Because of his belligerence, anosognosia, and defiance, the doc said further neuropsych testing was going to be rough. DH refused anyway.

All blood work tests were, and continue to be, normal.

The doc suggested MRI and PETScans (amyloid) to rule out other issues and to see whether he might be a candidate for Leqembi or some of the newer ALZ medications. He refused all meds and further testing for awhile then agreed to an MRI and a PETscan (we were authorized by insurance only for the regular PETScan) - both showed mild/moderate generalized brain atrophy, greater that what was expected for his age (late 60's) but showed nothing that suggested causes of his symptoms and no indication of stroke, tumor or vascular or frontal temporal dementia. The docs then offered traditional ALZ meds, which he refused. If he had agreed to get into the research protocol for Leqembi, the Amyloid PETScan would have been free).

2 years later, he agreed to the new blood testing for ALZ biomarkers. The tests showed no indication of those biomarkers.

So, what's the diagnosis? After all the tests and 4 years of reporting symptoms, the docs have refused to label him as having ALZ but the fact that they have continued offering ALZ meds makes me think ALZ. Also, the DBAT (Tam Cummings) staging suggests he is in Stage 5(?) with a toe into Stage 6 (around memory issues) and so I call it, "Dementia NOS" (not otherwise specified). We are taking the "wait and see what happens approach" as DH refuses further testing at this time.

My DH was a brilliant man, spoke three languages, and followed politics his entire life. These days he can't remember what happened 10 minutes ago and he consistently asks, "who is president now?" He still believes that nothing is wrong with him.

l7pla1w2 · April 22

https://alzconnected.org/discussion/comment/241375#Comment_241375

I'm sure everyone on this group understands. It all sounds so familiar. You (Anna2002) have a lot on your plate and no help, and it's awful. Your husband is no longer your partner, but your patient.

Deepest sympathies and total understanding. Dementia is so cruel, stealing the intellect of such highly intelligent people. My DW was a college professor for 30 years. She doesn't remember that, or where she worked, or where she went to school, or what happened 10 seconds ago. And most of the time she also thinks there's nothing wrong with her. (On rare occasions, she'll have a flash of insight and say, "Something's wrong with my brain. I can't remember anything.")

I suppose I could be cited for neglect. DW had a neuropsych work-up four years ago that diagnosed Alzheimer's, although that followed four years of check-ups with a diagnosis of impaired cognition. DW said the doctors were quacks who didn't know what they were talking about. I haven't done aggressive testing, because, in the end, you've got to deal with whatever the symptoms are, regardless of the diagnosis.

Anna2022 · April 22

https://alzconnected.org/discussion/comment/241395#Comment_241395

@17pla1w2, you speak the truth. In the end we have to deal with whatever the symptoms are, no matter the diagnosis! When the last test came back inconclusive, I said, "enough testing" because it really doesn't matter anymore. I tried for a diagnosis thinking it might give me an idea of what to expect. I'm sorry we are both here, dealing with the destruction of our lives and our LO's lives. That said, I am trying to thrive in the midst of all this. Some days are OK, some days are heavy lifting. Best of luck to us all.

H1235 · April 22

It sounds like treatable causes have been ruled out, that is good. The next thing to consider is if a more specific and detailed diagnosis would allow for some treatment in the hopes of slowing the progression. Would you and your husband want this? Some people may find that not having a specific diagnosis is troubling and more information about what they are dealing with may be a comfort. Other people are more troubled by the testing and even knowing the details. I think it’s a personal decision. There may be some differences in the progression from one type of dementia to the other, but there is also differences from one person to the next. Sadly the overall path is much the same. After my mom’s diagnosis we were told by the neurologist we could come back for follow ups but it was not necessary. There may come a time when he needs a doctor to prescribe medication to treat his symptoms. In my experience the pcp was not helpful.

Denise1847 · 2:35PM

https://alzconnected.org/discussion/72841/should-we-proceed-with-testing

When our Primary Care doc told us that my DH had Alz, we went to a neuro who confirmed it. The neuro offered further testing and we declined. My DH had sleep apnea but would not wear a CPAP, developed heart issues and AFib. The primary care started him on 2 meds to slow down the Alz. The only testing that I would consider (since the neuro is skeptical) is testing that rules out other types of medical problems that could mimic dementia. Spinal taps, certain blood work and an MRI could rule out other possibilities. Otherwise, the cognitive tests just frustrate and humiliate the patient.

Vitruvius · 7:51PM

My DW is near the very end of her journey. She is only 73 and has a rare variant of FTD/PPA, Semantic Dementia. Up through Stage 5 the symptoms were different from other dementias like Alzheimer’s, but as she progressed through Stage 6 and 7 (she is now Stage 7f), the symptoms seem increasingly identical to all other types of dementia. She stopped taking medication that might be specific to her dementia and that might have been contraindicated for other types in Stage 6. So knowing her specific dementia is really irrelevant in the later stages. I was asked by the university that diagnosed her if they could autopsy her brain (when the time comes) to confirm that they did indeed properly diagnose her. Although I’m sure they are correct, it goes to show that even with all the modern testing, at least for rare dementias, they really don’t know for sure until an autopsy what type they had.

Should we proceed with testing

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