I missed the news the day Sir Terry Pratchett died. Probably just as well as I wouldn’t have reacted well to it. Question is why not.
He’s a brilliant author, one of the few I could just pick and and read, revisiting over years and still finding new things. His later works were a bit hit-and-miss in places, but people move on and that’s all part of it. The announcement was just right.
I like that there’s a petition to Death to bring him back as we’re not done with him yet!
I think though that part of the sadness is that Dementia has lost its champion. I’m just old enough to remember the dormitory wards of lost souls, with up to twenty beds lined up against each side, whose patients spent the day contained and wandering one room, each identical in their white nighties with their white permed hair. When visiting in the heavily restricted two hour slot, the greatest challenge was to find your own relative, usually missing their own clothing or dressed in someone else’s taken from the cupboard by their beds. Dementia was the silent ‘inevitable’ that no one discussed, with stigma attached, the untouchable, with people locked away “for safety” but once out of sight out of mind. Famous people had it and silently disappeared.
Things were moving on anyway, but then “Pratchett’s got Dementia?!” happened. “To vanquish the demon you must first say it’s name!” and suddenly there was the knight to lead the battle and figurehead the vanquishing. Pratchett’s words are in modern health textbooks and the media was full of his views on the current political and research situation. He didn’t hold back. Instead of disappearing into the darkness impossible thoughts were finally possible…
A modern dementia ward, NHS so free of charge at the point of delivery, is still enclosed on the outside, but contains patient-lockable single en suite bedrooms, activity rooms that can include such things as a cinema (want to spend the afternoon reminiscing and telling us about it? You do that!), gardens, lounges, ‘quiet areas’, space and sunlight, with a host of Occupational Therapy including Tai Chi and visits any time for as long as you want, so long as the visitor isn’t depriving anyone of sleep or dinner. The hospitals now are about diagnosis, assessment and stabilisation in a comfortable homely atmosphere (best way to assess how you’ll get on at home after discharge), as with early diagnosis, stablisation, medication, keeping active, lifestyle tweaks and a bit of support, 55% of people have only a mild form and 2/3 of people with Dementia live in their own home and can hope to remain there for as long as they want.
A very different picture from only twenty years ago.