Should we proceed with testing

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.

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.

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

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.

@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.

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.