Logopenic Primary Progressive Aphasia and Alzheimer’s: What the Cognitive Tests Don’t Tell You
Greg’s post about his cognitive testing this week understandably worried some people. I’ve had quite a few friends reach out to check on him, and on me, (thank you!) so I thought I’d share a little more context from our appointment with his neurologist on Monday.
Because yes, Greg is declining.
And yes, his language in particular is declining pretty quickly.
But one thing that was really helpful for me this week was being reminded that those two things don’t necessarily tell us everything about what is happening in his brain.
Greg has logopenic Primary Progressive Aphasia, or lvPPA, which in his case is caused by Alzheimer’s disease. And unlike the version of Alzheimer’s most of us tend to picture, where memory loss is often the most obvious first symptom, Greg’s disease is hitting his language especially hard.
Which also means that some cognitive tests can make him look more impaired than he actually is in other areas because those tests are based on language.
For example, his MoCA score (a 30-point test doctors use to get a snapshot of different areas of cognitive functioning, including memory, language, attention, and problem-solving) was 27 out of 30 in January 2025, 23 in April 2026, and 18 this week.
That was obviously hard to see.
His neurologist told us that a decline of around 2–3 points a year would be more typical, so there is no question that this disease is moving fast despite all the things we’re doing to slow it down.
But then he helped us look underneath the number a little.
On the MoCA, Greg scored zero on questions that measure memory like asking him to repeat back five words or repeat an entire sentence. Which sounds alarming until you remember that those are incredibly language-heavy tasks for someone whose disease is specifically attacking his ability to retrieve and repeat words.
So his neurologist tried something different. He hid three objects around the room and about 15 minutes later, he asked Greg where they were.
And Greg easily pointed to all three places.
I wasn’t surprised as I have not yet been concerned with his memory, but I found that strangely comforting. Not because it means his memory is completely unaffected—it isn’t—but because it helped illustrate something I need to remember: just because I see a worsening of language symptoms does not mean everything else is also declining at the same rate.
Sometimes his language could make him appear more cognitively impaired than he actually is. But the truth is he still always knows who he is and where he is. He is still making decisions, problem-solving, managing much of his own life, and functioning pretty independently in so many ways. (As I’m writing this, in fact, he is in the kitchen following a recipe to bake his own granola!)
His neurologist felt those broader areas have shown only mild decline. That’s worth some serious gratitude and relief!
And I think that’s one of the trickier things to understand about this particular version of Alzheimer’s. He may score an 18 on a test, and that number matters, but it still doesn’t tell us the whole story of Greg.
If I’ve learned anything from reading so many stories of other people living with this disease, it’s how differently it can show up in every brain—what functions are affected first, what order things change in, how quickly some abilities decline while others can hold steady for quite a while.
So yes, it is sobering to think about Greg continuing to lose his ability to speak and understand language… but I also find myself taking a lot of solace in all the parts of his brain we still have with us.
