Every Wednesday, I’m sharing one chapter from my book, Me With Dementia Talking About…—a collection of short conversations written from the perspective of someone living with dementia. Each chapter explores one small piece of the dementia journey to help caregivers better understand what their loved one may be experiencing.
This week’s chapter
“Me” with Dementia, Talking About What Happens When Neurons Break Down
“Well, remember those lively little messengers I told you about — the neurons who were always gossiping, sparking, and passing notes? Dementia doesn’t exactly kill them all off at once. It’s sneakier than that. It starts by slowing their conversations, mixing up their messages, and leaving a few of them standing in the hallway holding notes that never get delivered.
At first, it’s just a few. Maybe the ones in charge of remembering names or keeping track of time. They still try — oh, they try — but their messages start getting garbled.
Instead of ‘You just had breakfast,’ I might get ‘Something about… food?’
Or instead of ‘This is your husband,’ my brain might whisper, ‘He looks familiar, but I can’t quite place him.’
As more neurons get tangled or die off, the whole neighborhood of communication starts to flicker. Streets go dark. The bridges between parts of my brain crumble a little. The memories I’ve built — the recipes, faces, and favorite songs — are still stored in there somewhere, but the road to reach them is blocked by debris.
- And when the signals can’t travel smoothly, everything feels harder:
- Thinking slows down, like wading through wet cement.
Words slip away mid-sentence. - Feelings swing without warning because the brain’s ‘emotion thermostat’ gets stuck.
My movements, balance, or judgment might falter, because the messages from my brain to my body take the long way around — or don’t arrive at all.
Here’s the thing: I still want to do what I used to. I still want to remember, decide, move, and connect. But when my neurons misfire or fall silent, my thoughts scatter like dropped marbles. So if I seem lost, it’s not because I’ve vanished — it’s because the path that leads to me is under construction.
Some days, a few neurons rally. The lights flicker back on. I might tell a story from forty years ago clear as day and then forget what we were talking about five minutes later. That’s just the rhythm of my changing brain — light, dark, spark, silence.
So when you see me hesitate, repeat, or drift — don’t think the person you love is gone. I’m still here. Some of my neurons just need a little extra time to find the right doorway.”
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Questions This Article Answers
Why do people with dementia forget things?
Dementia damages neurons and the connections between them, making it harder for the brain to send and receive messages needed to access memories.
Does dementia kill brain cells?
Many forms of dementia gradually damage and eventually destroy neurons. Before brain cells die, they often struggle to communicate effectively with neighboring cells.
Why can someone with dementia remember old memories but forget recent events?
Older memories are often stored across stronger, well-established brain networks. Recent memories depend on newer connections that are often damaged first by dementia.
Why does someone with dementia have good days and bad days?
Because different parts of the brain may function better at different times, communication between neurons can temporarily improve or worsen, leading to fluctuating abilities, especially in conditions like Lewy body dementia.
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This article is an excerpt from Me With Dementia Talking About…, a book containing more than 500 short chapters that explain dementia in simple, compassionate language from the perspective of a person living with the disease.
Whether you’re caring for someone with Alzheimer’s disease, Lewy body dementia, vascular dementia, frontotemporal dementia, or another form of cognitive impairment, these conversations are designed to help you better understand the person behind the diagnosis.
A new excerpt is published every Wednesday.