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A friend asked me recently what “late-stage” dementia looked like. Frankly, it looks different for everyone, but people in late-stage dementia usually have a few things in common: some lack or loss of speech, limited awareness of other people, almost entirely dependent on others for eating, using the bathroom, and other ADLs, confusion over use of objects and utensils, noise-making and/or tactile tendencies, etc.

We have a resident who spends most of her day in her wheelchair. I’ve never really seen Sally* acknowledge anyone, unless you count the times when someone is feeding her, or helping her with another ADL. I’ve said “hi” to her before and never gotten a response, but yesterday I decided to give it another try.

I approached Sally’s wheelchair and kneeled down at its side. I reached out and gently touched her hand. “Hi, Sally! How are you?” I asked, loud and calm.

Her eyes stayed locked to the ceiling in a gaze, but they lit up with happiness. A smile widened across her face. “Hello!” she smiled back. “I’m doing well.”

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

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16 Things I Would Want If I Got Dementia

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I wrote this poem years ago, but to date, it’s the most popular piece I’ve ever created.

16 things poster