The Label That Belongs To Us I’ve spent a lot of time lately sitting in rooms where people talk about me while I’m right there. They use big words, clinical terms, and "management strategies" to describe my own life. In these spaces, you’ll often hear the phrase expert by experience. It’s a nice sentiment, isn’t it? It’s meant to signal that the person being discussed actually has a seat at the table. But often, in dementia circles, "Expert by Experience" becomes a bit of a c

If you've been following my journey, you'll know that life with young-onset dementia isn't exactly what I'd planned for my sixties. It's a bit like driving through a thick fog; some days I can see the road clearly, and other days I'm just hoping I don't hit the kerb. One thing that's become crystal clear to me, though, is how we talk about care. We hear the term Person-Centred Care all the time. It sounds lovely, doesn't it? It sounds like progress. But as someone living thi

I never imagined writing a blog post from my sickbed, but here I am. About a week ago, I was in a car crash. It wasn’t my fault, but I ended up with broken ribs and a punctured lung. Thankfully, I'm on the mend, but this whole experience made me realise how important it is for hospitals to recognise and properly support patients with dementia—not just treat their injuries. You see, I've got young-onset dementia. I told the hospital staff about it as soon as I was admitted. In

Sorry to bore you, but I've got a bit of "spring fever" at the moment, so I want to reinforce my message about the benefits of being outdoors with a few musings about the benefits of walking and independence. I’ll tell you straight, when you get that diagnosis, especially when you’re still on the younger side, your first instinct is to bolt the door, put the kettle on, and stay right where it’s safe. It feels like the world’s shrunk to the size of a thimble overnight, like th

Life doesn’t always go the way you planned it, does it? One minute you’re mapping out the future, thinking about the next job, the next project, the next holiday, the next chapter. Then something comes along and flips the table. For me, that moment came with a diagnosis of young-onset dementia. I’ll be honest with you. At first, it felt like the world had suddenly shrunk. The plans I had in my head didn’t just wobble a bit; they fell over completely. There’s a kind of grief t

It’s a funny thing, isn't it? The way the world starts to feel like it is shrinking once you get a diagnosis like young-onset dementia. One day, you're juggling a career, a mortgage, and a hectic social calendar, and the next, you feel like you're being wrapped in bubble wrap by well-meaning relatives. People start looking at you with those "tilted head" expressions, as if you might break if the wind blows too hard. Even so, I have learned that the world doesn't have to shrin