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Nicci Gerrard: "Dementia is scarier when you try not to think about it" Society

Nicci Gerrard is a journalist and activist, who writes bestselling novels with her husband by the name of Nicci French. He won the 2016 Orwell award for exposing Britain's social ills for his reports on the care of dementia patients in the UK.

What prompted you to write this book?
I didn't want to write a memoir about my father [John Gerrard, who died in 2014 after 10 years with dementia]partly because there have been many wonderful memories of dementia and I saw no reason to add another, partly because he was a private man and I didn't want to invade his privacy more than necessary. But I needed to write a book on dementia, after witnessing what he had gone through and then launching John's Campaign with my friend Julia Jone s. I found myself thinking more and more about what it means to live with dementia, and also what dementia teaches us about our sense of self, how we appreciate people and what it means to be vulnerable. He deeply shocked the way I thought of all those things.

Tell me about the campaign and what you've decided to change.
Before Dad went to the hospital, he was doing pretty well – it was a gradual, rather sweet decline. Then there was this abrupt break-up in his condition because, during his five weeks in hospital, just when he needed us most, we were not allowed to see him. In retrospect, it seemed cruel and useless for carers not to be met in the hospital along with their loved ones and that it was absolutely necessary to change them – and it seemed so simple to change.

But it wasn't that simple …
I thought it would be the shortest campaign in history: it is one of these very rare proposals in which there is no disadvantage. But the national health service is such a fragmented and bureaucratic issue, so it was about changing the culture in every hospital: there was a lot of people going around, talking to the nurses and making sure they joined the movement at their conditions. But now every acute hospital in England and almost every acute hospital in the UK, in one way or another, has joined the campaign.

Do you think we are improving as a society in dealing with dementia?
Sure. We're not good enough yet, but the world has changed so radically 40 or 50 years ago. For my father's generation, it's still quite a stigma. They don't talk about it, they often try to deny it and hide it, and this can make it extremely painful for them and for those around them. But the younger generations talk about it and write books about it, like Terry Pratchett when he had dementia, and it's part of the conversation. People feel very scared – and they're right: it's very scary – but it gets scarier when you try not to think about it.

Do people with dementia have something to teach us?
Absolutely. The first thing to say is that when someone has dementia, they are always the same person, they are still in the world with us, we should still recognize that they have value. Over and over again I have seen how people with dementia are treated as stupid or even as objects, but they are not stupid – they have a brain disease, but they are still able to contribute.

In a broader sense, dementia challenges what it means to be human. Especially in the western world, we appreciate so much the autonomy, the agency, youth, vigor, purpose, self-sufficiency, but what happens when we are no longer young, healthy and autonomous, when we are at mercy of other people?

Was it a distressing book to look for?
No, almost the opposite. There have been times before and after Dad's death when I was pretty everywhere and it seemed like a tragedy. But researching the book and meeting people with dementia and thinking and reading about it, I felt immensely more optimistic towards the end. It is not just a story of despair, it is a story of love, courage and adventure.

Have you encountered works, literary or otherwise, that have captured you having dementia?
The novel Out of mind, written in the 80's by a Dutch writer named J Bernlef, he is handsome, sad and quite extraordinary. The game The father by Florian Zeller is also extraordinary, because it stages the process of dismantling dementia. These works concern both dementia, but they also make you question the stability of reality.

Are you afraid of dementia less now that you've looked in detail?
Yes. That doesn't mean I think it's less heartbreaking. I fear it less because I've thought more about it. It's like lighting a light in an area that I tried not to look at. I must say that maybe, I hope, I would try to find my way out, not so much out of fear but out of wanting to leave the party before the party leaves me.

Do you mean that you would take your life before dementia took hold?
Yes. But he hesitates to say it, because in reality it would be very difficult. You should do it while you still have the capacity. Perhaps, when it came to this, I kept thinking: once again up the mountain, another glass of red wine, another meal around the table with my family …

Did writing the book help you manage your father's death?
Yes. It was a way to give me permission to think patiently about what was happening, recognize it and say goodbye. It was like trying to put a healing hand on it. And that's what I wanted to do in a broader sense with this book: put a healing hand on a disease that can be so chaotic, messy and terrible.

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