Dementiaville is a Channel 4 documentary series that “explores a progressive approach to the care of people living with dementia, using reconstruction and archive to re-discover the person behind the illness”.
“I was an advisor on the programme. There was five people, they had a panel. It was a virtual panel, really, we did it all by e-mail. I know the other people very well, they’re all four professors, and me. So it’s four very esteemed people in the dementia world, and then they sort of included me in that little group.
We would watch each programme and we’d give feedback. Right before the programmes were made, the directors came down to see Rosemary and I, and discuss the format, and the synopsis for the programme if you like, and the outline for the programme. Rosemary and I both gave some input into that. Some they took on board, some they didn’t. It was good to get Rosemary’s view on that as well, because she came to it from a slightly different angle than I did, obviously, and it counterbalanced and supplemented the views of the four professors. Some things we won, some things we lost, you know. For example the title of the programme, right from the word go, I’ve tried to contest. I was after a title like ‘Living with Dementia’ or ‘People with Dementia’. Channel 4 really stuck to the idea of the Dementiaville label, even though in the initial stages they thought that it was just a working label, but I think they had already decided in the beginning that that’s what they’re going to go with.
So, looking at the programme in the light of the question, what do I worry about? I watched the first programme obviously before it went out, gave some feedback on it. Most the the residents in the care home who were shown, which was a cross section I’m sure, were happy and seemed very well looked after. There was this ethos in the home around total immersion into false reality, that I feel uneasy about. It has a place, in caring for people with dementia, to allow them and to support them and to increase them to look back to their lives, and to reminisce, to use nostalgia, to reconnect with their past, to be happy. To use that to be happy.
But then it’s this crossover of back into reality again, that concerns me. Because you and I, and any other person who isn’t in the late stages of dementia, will often use nostalgia or reminiscing as a human emotion and a human experience. We all connect back to our past, but we all reconnect back to our present! And with people with advanced dementia, it’s the last part of that equation that does not happen. It doesn’t happen easily. And that’s my concern around that – because what is true, and what is basically living a lie. I just worry about – I like people to treat me truthfully and honestly. And if I’m going to be in a care home, to be treated kindly, obviously, but truthfully and as honestly as they can, while maintaining that kindness.”