How We First Noticed Alzheimer’s—And It Wasn’t About Memory

Greg recently shared a post about how his Alzheimer’s might be affecting his ability to regulate body temperature. That sparked me to think it might be helpful to share some of the other ways the disease can show up—because while most of us think of Alzheimer’s as a “memory disease,” memory is only one of many things the brain does.

While it was eventually a PET scan that definitively diagnosed Greg with Alzheimer’s, it was his meeting with a neuropsychologist five months earlier that first gave us a window into how his brain was functioning. At that time, he was diagnosed with MCI (mild cognitive impairment). Ironically, his memory actually tested within the average range for men his age. What showed up as most impaired were three other functions:

• taking in new information

• processing that information

• and then responding to it through communication

In other words, once something “got in,” he was fairly good at holding onto it. But the challenge was in getting it in cleanly in the first place.

Here’s what that looks like in daily life:

• He gets overwhelmed with too much information at once, or directions that have multiple steps.

• Walking away from a conversation, he may not have fully absorbed it all.

• I’ve learned to slow down, repeat myself, pause, and sometimes write things down—not because he can’t remember, but because organizing information helps him manage it.

• Overseeing big projects, like planning our Japan trip, would be exhausting—too many details and decisions to hold at once.

• I often sit with him to help organize his thoughts, ask clarifying questions, brainstorm Facebook posts, and help him make decisions based on his feelings.

• I stand ready to help him relay details and stories to others—filling in pieces and helping him find the words.

So what does this remind us? That Alzheimer’s is about far more than memory. It’s a disease that impacts multiple brain systems—sometimes long before memory loss becomes obvious.

So many of you have asked me, “What symptoms did you first notice with Greg?” And the truth is, it can look different for each person. If you or someone you love is concerned about changes in brain function, I can’t recommend enough asking your doctor for a referral to a neuropsychologist. It’s a bit like having a mechanic look over the engine of your car—you’ll get a much clearer picture of what’s working well, what’s struggling, and how best to support it.

As they say, “Knowledge is power.” The more we understand about how the brain works and the earlier we can spot changes, I think it becomes easier with compassion and supporting the people we love.