How to encourage Dr to do full neuropsychological eval?

MHWood

Hi all, I am new to the forum, and already appreciate the knowledge and support! My mom is very clearly suffering from MCI and so far, this is all they will diagnose her with, despite the fact that as a family, we see tremendous memory loss. She is a very intelligent, well-educated woman, and still performs extremely well on the short tests like the MiniCog. We would like to have a full neuropsychiatric evaluation, but her geriatrician is reluctant. Two questions. 1) What is the full battery of tests called? 2) Any advice on making this happen? She is willing to take the tests, and if for no other reason, we'd like to have a baseline (as some members above have mentioned). Thank you.

M1

Welcome to the forum. Has the geriatrician told you why he is reluctant? There is a general reluctance in the medical community to diagnose dementia off the bat, they typically start with a diagnosis of MCI (not sure why, frankly, except that they don't want to be the messenger that gets shot and are kind of "
easing" you into it) and want to watch for changes over time. Those with a lot of cognitive reserve like your mom can continue to score well on the short tests for a long time.

If you are wanting to do the more extensive tests to convince your mom that she has dementia, that's probably not a valid reason. Early lesson to learn is that you don't try to reason with someone whose reasoner is broken. When I first suspected problems in my partner, I thought that hearing a dementia diagnosis from her doctors would have impact on her, and that she would know the implications and realize she had to defer to me. Nope. Our doctor actually laughed at the suggestion. Look up anosognosia: most with dementia have it, and it's a true inability to perceive their deficits (not denial). They think they are fine, and no reasoning with her will convince her otherwise.

My partner never went through formal testing (though she had had brain scans and other tests along the way which ruled out any treatable causes). She thought about it at times regarding participating in clinical trials, but frankly we always had too much else going on to ever pursue it, and she lost interest as she got worse. We had short trials of Aricept and Namenda, neither of which she tolerated. Otherwise it's just been a slow downhill slog over the last twelve to fifteen years.

H1235

https://tala.org/wp-content/uploads/2019/04/Tam-Cummings-LLC-Handouts.pdf
If you are looking for a better idea of where she is at, this staging tool is very helpful. I know it’s not the same as an official diagnosis. Maybe if it was filled out and given to her doctor it might convince him to order more testing(especially if she appears to be beyond mci with the stagingchart). This might also help with what to keep an eye open for moving forward.

Jackie_K

Hi @MHWood - I'm so glad you've found the forum to be helpful, it has been such a huge source of support for me too. A couple of responses here:

I'm actually not sure what the neuropsych tests are called - my mom has one coming up and they're just calling it a neuropsych evaluation. (Her neuro wants to retest and compare to her results last summer to get a sense for how much she has declined). Maybe others can chime in here, but if you're requesting a neuropsych test then they should already know what that means.

I am not sure why the doctor would be hesitant to test, especially if she's willing to do them - that doesn't really make sense to me so I would ask. Some thoughts - maybe they are still in the process of trying to rule out other causes first? (My mom's doctor wanted to rule out everything else first before saying it was likely some form of dementia). Does the doctor have all the information your family does? My mom is pretty great at masking, as I think many are in the early stages of the disease, so once I started calling her doctor directly to share specific examples and concerns, it helped give her a more complete picture of what was going on.

Please let us know how it goes. Your mom is lucky to have you as her advocate.

MHWood

Thank you for your responses - my mom is doing a pretty good job of accepting her illness, and isn't very defensive about it. She was diagnosed with MCI 2 years ago. I think she'd be happy to take the tests. She gave up driving when requested/urged by us and her geriatrician. I will ask for a full neuropsych eval from her neurologist when we see him next. I think her geriatrician just wanted to say "She did fine on the MOCA" and leave it there, he wasn't interested in pursuing any further information.

Another issue we are having is that she has a LTC policy and the geriatrician wouldn't sign last year (!) even though he encouraged her to not drive, and he knows we won't leave her alone anymore. We are going to speak with her neurologist and see if he is more willing to be helpful esp since he prescribed aricept.

The staging tool linked is super interesting - thank you for that!

Anonymousjpl123

I went crazy trying to get my mom a true, thorough evaluation and diagnosis. By the time we were going to doctors she was way beyond MCI, but I didn’t know how far or even if it was Alzheimer’s (I suspected NPH, which can be treatable by surgery). It was a lot of tests, and the first neurologist could not even be bothered to share the results with me (she went in without me, but that’s another story. Like your mom she is very intelligent and has a lot of pride, but her denial was fierce).

She had 2 neurology visits, 2 mris, a lumbar puncture, finally (after a 7 month waitlist) a full neurological work up at a memory center. Alzheimers and possible NPH. In hindsight, I knew what it was, I just needed the confirmation.

You may find getting her a full work up helps you know where things are. But as others have said, other than ruling out strokes and vitamin deficiencies and other potentially reversible causes, there is not much they can do. So keep your expectations grounded. This disease really is a slog.