A medical mystery because of a missed dementia diagnosis

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Dementia gets missed. A lot. It gets missed by family members, friends, and even physicians and people who are “supposed to know” about it. 

I’ve met a lot of family members of people with dementia who will say to me, “I know mom has dementia, but her primary care doctor says she’s fine! What do I do? I feel like I’m crazy.” I always assure the family: no, you aren’t crazy, the doctor wasn’t looking for dementia and missed it.

I met a family just the other day who had visited a ton of different doctors, all looking for a cure for difficulty eating. After speaking to the client, it became really clear that her thoughts and judgement were confusing and disorganized. Because she was eloquent and well-spoken, the illogical statements that she was actually making were going, for the most part, unnoticed. She stated that she “didn’t want to eat” even though she knew she would die if she didn’t start ingesting some calories. 

At the doctor, she was great! Clever, funny, talkative, and educated, so it wasn’t a surprise to me that doctors were looking at her heart, her lungs, her pancreas, her kidneys, and more, almost all of them ignoring her (obvious to me) dementia. 

I spent some time looking through her well-organized medical history and found a ton of notes from various hospitals and rehab facilities. Only one of them mentioned that she had “maybe” some “frontotemporal damage” in her brain. There it was. A CT scan had revealed some dementia, but everyone thought that her inability to eat had something to do with her stomach. Really, it probably wasn’t her stomach at all: it was her brain, telling her not to eat.

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Rachael Wonderlin is an internationally-recognized dementia care expert and consultant. She has a Master’s in Gerontology and is the author of two published books with Johns Hopkins University Press. Rachael owns Dementia By Day, a dementia care consulting and education company.

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