That's the thing with dementia. If you're with somebody who has a serious illness, you can usually talk to them, have a laugh every now and then - the person is still with you. With dementia, there's no conversation; there's no togetherness, no sharing.
You don't just wake up one day with dementia or Alzheimer's; these conditions are developmental. Even when a problem triggers the need to collect data, it's reviewed by a specialist and filed away. There's no central repository allowing information to be shared across a multitude of researchers worldwide.
The terror dementia sufferers must feel is unimaginable, but the techniques they use to hide their difficulties - the ducking and diving and keeping the world laughing - are perfectly understandable.
Dementia is often regarded as an embarrassing condition that should be hushed up and not spoken about. But I feel passionately that more needs to be done to raise awareness, which is why I became an ambassador for the Alzheimer's Society.
What I did when I identified Mike Webster's thing, I showed it to other doctors. We all agreed that this was something new, but we had to give it a name. This was not dementia pugilistica. Maybe we could have called it dementia footballitica!
I became demented overnight. Sudden onset is one factor that distinguishes my form of dementia from the more common form associated with Alzheimer's disease.
Dementia resembles delirium in the same way an ultra-marathon resembles a dash across the street. Same basic components, vastly different scale. If you've run delirium's course once or twice in your life, try to imagine a version that never ends.
Dementia is, after all, a symptom of organic brain damage. It is a condition, a disorder of the central nervous system, brought about in my case by a viral assault on brain tissue. When the assault wiped out certain intellectual processes, it also affected emotional processes.
Those with dementia are still people and they still have stories and they still have character and they're all individuals and they're all unique. And they just need to be interacted with on a human level.
