A thank you to Wendy Mitchell for her work on dementia

In my last blog post about assisted dying, I spoke about Wendy Mitchell and her incredibly brave approach to her own death. This week, I want to pay tribute to her extraordinary work raising awareness about dementia and reducing much of the stigma surrounding it.

Even though I’m familiar with dementia through my father’s experience, Wendy’s book Somebody I Used to Know gave me a profoundly new perspective. It opened a window into what it was actually like to live with dementia—something my father has never really articulated. He’s a man of a certain generation who has never talked much about his emotions—and now, as his words have begun to slip away, he simply can’t.

One of the most striking realisations I had while reading Wendy’s book was that we were already much further along in my father’s dementia journey than I had understood at the time of his diagnosis. Looking back now, I see how he likely hid the signs—not just from us, but perhaps from himself too. His brain was doing what it could to protect him. And ours may have been doing the same, cushioning us with denial about what lay ahead.

So when I first saw that Wendy had written multiple books while living with dementia, I couldn’t quite fathom how she had managed it. It wasn’t until I reflected more that I realised she must have been at an earlier stage than my father was by the time of his diagnosis.

Wendy described living with dementia as being like the weather: there were clear days and foggy ones. It was a perfect metaphor. When my dad was still living at home, there were days when he was more lucid, and we could have a pleasant chat—he’d ask about my work, laugh at something I said. And then there were days when the fog settled in, and he’d be more disoriented, unsure, or withdrawn. I wonder how long he had been experiencing these changes in the weather before any of us realised.

These days, I’d say we live mostly in that fog. He can’t hold a conversation easily—he’ll begin a sentence but often can’t finish it. I sometimes suggest words I think he might be searching for, and he’ll agree—though I’m never quite sure if they’re the right ones. Other times I just smile and nod, to help him feel heard, to preserve a sense of connection and comfort.

Or perhaps the fog has lifted, but we’re in a new and unfamiliar landscape. He often seems content now, but his life has changed completely—no longer the man who read the paper every morning or walked with me through our local parks. His old routines are gone, replaced by a different rhythm in the care home.

What I always admired about Wendy was her kindness and resilience. She continued to live as independently as she could, for as long as she could, staying connected with others and speaking honestly about the challenges of dementia. Her determination to keep sharing her story remained remarkable until the end.

I especially appreciated how openly she talked to her daughters about her wishes further down the line—about what she wanted for her death. I wish I’d had those kinds of conversations with my father. Wendy gave voice to many of the things families may find hard to say out loud.

Her writing also reminded us that a dementia diagnosis didn’t mean the end of joy, connection, or new experiences. She talked about going gliding, about making new friends and reconnecting with old ones—even if some of them were frightened to come and see her when they first heard about her diagnosis.

In the early years after my father was diagnosed, I could still watch operas with him, and he was as moved by the music as he ever was. He could sit with my son, who was a toddler at the time, and sing along to nursery rhymes on an old DVD my son loved to watch. I could walk with my dad up the hill in Brockwell Park and look over the London skyline in all its higgledy-piggledy beauty, and smile at each other.

That phase seemed to disappear so soon for us, but I suspect part of the difference between Wendy’s experience and my father’s is that she engaged with her diagnosis early and actively. Or perhaps my dad’s dementia advanced more rapidly than hers did—dementia really is different for everyone. Or maybe that phase always goes too quickly, looking back.

Either way, it feels like her proactive approach helped her hold on to more of herself for longer. In contrast, my dad stopped working just before the first Covid lockdown, and the sudden shift into retirement and isolation seemed to speed up his decline. It was then we began to see that it wasn’t just ordinary forgetfulness.

Wendy’s reflections helped me make sense of some of the subtler changes I’d noticed in my dad but never fully processed. His tastes shifted—his reading and TV preferences moved toward simpler narratives; his food choices changed too, tending towards school dinner–type fare. I hadn’t connected these things to dementia at the time. It just seemed like age, or nostalgia. But Wendy’s account—especially her description of how certain foods no longer felt or tasted the same—helped me understand that these sensory and cognitive changes were all part of the picture.

My dad was a journalist. He had a way with words and could have written a beautiful book of his own, had we recognised the signs earlier. Watching him now, mostly silent, is a painful contrast.

So thank you, Wendy. For your honesty, your kindness, your strength—and above all, for your words. You helped so many people understand dementia better. You helped me connect more deeply with what my dad has been going through. And that means the world.

I’m always interested in finding out about new books about dementia, especially memoirs – let me know in the comments if you have any recommendations.