Inspirational people in dementia? I know them when I see them.

My interest in dementia started about 17 years when a graduate student in cognitive neurology at the University of Cambridge.

There’s one thing I can say about brilliant people. They never advertise themselves as brilliant.

Take for example when I showed Prof Trevor Robbins my findings from a group of patients with the behavioural variant of frontotemporal dementia on a test of ability to switch “cognitive set”.

What’s “cognitive set”?

Say I asked you to think of a colour. “Red”

And another? “Green”

And another? “Blue”

Now tell me the name of a shape.


I am unable to shift cognitive set. I am “stuck in set”.

Anyway, it was a bit more complicated than that. I was on the Downing Site in the head of department’s office at the University of Cambridge in 1998.

He said, “That’s amazing!” And then pulled off the top shelf a paper from a journal on psychopharmacology and showed me the virtually same graph from adults who’d been given a ‘low tryptophan drink’. This had depleted a chemical in their brain called serotonin, it’s thought.

That’s brilliant.

Or take another time when I was a hapless junior doctor on Prof Martin Rossor’s dementia and cognitive disorders firm at the National Hospital for Neurology and Neurosurgery.

I was asked to do the investigations for a man in his 30s who’d presented with a profound change in behaviour and personality over several years, who’d also had some vague memory problems.

I was advised to stick a needle in his back to get some fluid off his spinal cord in virtually a space suit for protection.

I organised the MRI brain scan. I showed it to Dr John Stevens at the National. He said, “You know what is, don’t you?”


“HIV dementia”

“What does he do out of interest?”

“He’s a lap dancer in Soho.”

That’s brilliant.

You see, I know brilliant people in the dementia arena when I see them, and almost virtually always they never shout about their abilities.

Take for example Kate Swaffer and her brilliant blogpost on dementia and human rights this morning.

Or Beth Britton’s consistent work on raising awareness of issues about caring.

Hunt tweet

And Ming Ho’s work too. And Darren Gormley’s. And Jo Moriarty’s.

I don’t need book reviews, award ceremonies or conferences to tell me how inspirational or brilliant people are.

I don’t wish to use Twitter for that either.

The phrase “I know it when I see it” was a colloquial expression by which a speaker attempts to categorise an observable fact or event, although the category is subjective or lacks clearly defined parameters.

The phrase was famously used in this sense by United States Supreme Court Justice Potter Stewart to describe his threshold test for obscenity in Jacobellis v Ohio (1964).

Dementia is not the same as an obscenity. But the same principles for this test apply, I humbly submit, m’lad.

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