Dementia Is Not a Switch — It’s a Coordination Failure
Most people who live alongside dementia notice something that medicine still struggles to explain properly.
Clarity comes and goes.
Some days are good. Some are foggy.
Someone can be “still there” in the morning and oddly absent by evening.
Sleep helps. Illness makes everything worse.
Certain medications suddenly seem to dull thinking, even when scans don’t change.
None of that fits the idea that dementia is simply neurons dying one by one.
And that’s because it isn’t.
Dementia does involve long-term structural damage in later stages, but it almost always starts much earlier as a coordination failure, not a loss of intelligence, personality, or memory storage. The brain still has the information. What it struggles with is holding itself together long enough to use it.
That distinction matters more than most people realise.
The brain runs on coordination, not just cells
Thinking isn’t just about neurons firing. It depends on timing, signalling stability, membrane behaviour, energy delivery, and the ability of different brain regions to stay in sync long enough for thoughts to form and complete.
When that coordination layer becomes unreliable, the brain behaves strangely but predictably:
Thoughts start but don’t finish.
Words are “on the tip of the tongue” and then vanish.
Attention flickers.
Emotional responses become disproportionate.
Fatigue makes everything worse.
Importantly, this can happen long before large numbers of neurons are lost. That’s why early dementia often looks inconsistent rather than steadily progressive.
It’s also why people can seem surprisingly lucid in familiar environments or calm conditions, and much worse under stress, noise, illness, or poor sleep.
The infrastructure is struggling — not the content.
Why dementia fluctuates
If dementia were simply about dead cells, it would be relentlessly linear. It isn’t.
What fluctuates is the brain’s ability to maintain a stable internal state. That stability is sensitive to things most models treat as secondary:
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sleep quality
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inflammation
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metabolic stress
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infection
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medication side effects
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autonomic balance (fight-or-flight versus rest-and-repair)
When those pressures are low, coordination holds longer. When they rise, the system fragments more quickly.
This explains why a urinary infection, a night of bad sleep, or even emotional stress can produce dramatic cognitive decline — and why treating the trigger sometimes brings surprising recovery.
Nothing “grew back”. The system simply became coherent again.
Memory isn’t gone — access is
One of the most distressing myths about dementia is that memory is simply erased.
In many cases, it isn’t.
People with dementia often recognise music, voices, emotions, routines, and familiar faces even when they struggle with names or sequences. That tells us something important: memory storage and memory access are not the same thing.
What fails early is the routing and integration needed to retrieve and use memories reliably. That’s why cues help. That’s why repetition helps. That’s why familiar environments are stabilising.
The memories are still there. The system just can’t always reach them.
Why some treatments feel random
Many families notice that some drugs seem to make cognition worse even when they’re “supposed to help”, while others unexpectedly improve clarity.
That’s not random either.
Any drug that:
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increases noise,
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blunts signalling,
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interferes with membranes,
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or disrupts timing,
can worsen coordination, even if it targets a completely different condition.
Conversely, interventions that quietly improve sleep, reduce inflammation, stabilise metabolism, or calm autonomic overactivity often produce cognitive benefits — even when they weren’t prescribed “for the brain”.
This doesn’t mean dementia has a simple fix. It means the brain is a system, and systems fail in ways that are sensitive to context.
What this reframing gives us — and what it doesn’t
This way of understanding dementia does not promise a cure. That would be dishonest.
What it does offer is something else that matters deeply:
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an explanation for why decline is uneven
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a reason early stages are often missed or dismissed
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a framework for why support, environment, and physiology matter
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and a basis for slowing, stabilising, or delaying decline in some people
It also removes blame. Dementia is not a failure of effort, intelligence, or personality. It’s a failure of biological coordination under load.
And importantly, it reminds us that presence is not all-or-nothing. Someone can still be themselves even when the system that expresses that self is unreliable.
Why I write about this
I write about dementia because too many explanations insult the lived experience of patients and families by pretending fluctuation doesn’t matter.
It does.
Understanding dementia as a coordination disorder doesn’t make it less serious — it makes it more understandable, and therefore more humane.
And that’s where better care always starts.
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