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Dementia inspired children’s author Mike Revell to write, and now he hopes that his book will help other people deal with the “light-fingered dementor” of a disease

The dementia statistics are scary. According to the Alzheimer’s Society, 850,000 people suffer with the disease in the UK. It’s responsible for 60,000 deaths every year and costs us £26 billion in that same timeframe. But the statistics are only half the story.

My story

My grandma died two years ago, but before that, she suffered with dementia for a long time. I’d seen the disease before – it gripped my great grandmother when I was a kid – but I laughed it off in the way you do when you get offered a pocket money for the hundredth time and you don’t really understand it.

This was different. I didn’t get chance to know my great grandmother, but I grew up with my grandma. She read me myths, and gave me my first copy of Lord of the Rings. She bought me a dictionary for my eleventh birthday because it was a fitting present for someone entering double digits. She was always there.

Then she wasn’t. It was slow at first. She took longer and longer to read menus, and snapped when you pressed her for a choice. She’d get me muddled up, first with my brothers, then with my dad, and finally with the nurses at the care home. As dementia stole more of her memories, outwardly she became less and less human: skin and bones on a bed, her wrinkled mouth gaping open and closed as she tried to eat her duvet.

When she no longer knew who she was, it became our family’s job to remember her that much more. We told stories long into the night, and spent hours looking over old photos. We kept her alive in our minds because she was no longer alive in her own. Yes, the statistics are scary, but they’re nothing compared to the details; the reality of what dementia is, what it does.

The inspiration for Stonebird – a children’s book

Experiencing that inspired me to write Stonebird, my first children’s book, about a boy who struggles to deal with his grandma’s dementia until he discovers a magic gargoyle that changes his life in impossible ways. I wanted to help people deal with the details.

It’s easy to think that it’s pointless visiting someone with dementia, especially when you’re young. Before long, they’ll forget you were there at all. But dementia doesn’t just impact the person suffering with it. I visited my grandma to brighten her day, but I also visited to help my mum. Dementia is a light-fingered dementor of a disease, and it’s very lonely being around it. It’s easy to feel helpless, because memories are fragile things, and easily stolen. But they’re also incredibly powerful, and easily remembered.

So remember. Remember with everything you’ve got. Dementia might be a powerful enemy, hard and heartbreaking and painful to fight. But remember, and we can fight it. Remember, and we can win.

More widely, if you are looking for more information on dementia, you can visit our website section on this topic, which looks at the different types of dementia.

Mike Revell is the author of Stonebird, which is influenced by the real experiences of seeing his grandmother suffer from dementia, as well as his love of myths. He grew up around Cambridge and now lives next to a castle in North Wales. To learn more, visit him at: www.mikerevell.com or @revellwriting.

Mike Revell and dementia and stonebird

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