Introduction Campaigning is supposed to be about voice; about amplifying the people most affected, about speaking truth to power, about shaping change that actually improves lives. Yet as someone living with dementia, I’ve learned a difficult truth: many dementia charities don’t represent me when they campaign. They speak about dementia, around dementia, and sometimes even over people with dementia, but rarely with us, and almost never for us in a way that feels true, accurat

Introduction Have you ever stopped to wonder what would happen to your “digital self” if you suddenly weren't around to clear your browser history? We spend our entire lives building an invisible empire. There are the thousands of our family photos sitting in cloud storage, our online bank accounts with paperless statements that leave absolutely no physical trail, and that mountain of streaming subscriptions we secretly pay for but rarely use (Yep, guilty as charged). We writ

Meeting the Challenge of decline Living with young-onset Alzheimer’s disease has meant becoming an expert in a landscape that refuses to stay still. For a long time, I’ve mapped out my routines, found my workarounds, and established a feeling of control over my daily life. I tell myself that I know what to expect. But the reality of a progressive condition is that it is always moving, always reshaping the extent of what you can comfortably do. Lately, I’ve been noticing a shi

Building Global Services Introduction When you get a diagnosis like this before you are sixty-five, you quickly learn that the systems built to support you are often fragmented, outdated, and desperately lacking in consistency. But as I look beyond my own backyard, I see that this is not just a British problem; it is a global crisis of equity and voice. What infuriates me most is the wall of patronising assumptions we face the moment we receive our diagnosis. People in positi

When you're living with dementia, life can sometimes feel like trying to solve a jigsaw puzzle where the pieces keep moving. On good days, the picture is clear. On other days, it takes a bit more effort to fit things together. But the one puzzle we really shouldn't have to fight with is the system that is supposed to support us. As a member of the Northamptonshire Dementia Action Forum (NDAF), I get to see first-hand the incredible passion of people who want to make our count

We need an accreditation scheme NOW! Introduction Accreditation is a word that sounds like it belongs in a corporate boardroom, but for those of us living with dementia, it actually means something incredibly personal. It is about trust, safety, and being treated like a human being. When an organisation, a care provider, or a community project is officially accredited, it means they have been thoroughly checked by an independent body. They haven't just ticked a box or put a f