Many of us will be affected by Alzheimer’s disease, so let’s plan for that reality

‘Increasingly, academic researchers want to involve people with dementia not only as subjects but as advisers or even co-researchers.’ Photograph: Andrzej Wojcicki/Getty Images/Science Photo Library RF

The news that the journalist, presenter and broadcaster Fiona Phillips has Alzheimer’s disease has made us all stop and think. Many will feel desperately sad for her, and frightened for themselves. In the UK, one in 14 people over the age of 65 have dementia, and one in six people over 80, so it’s likely that most of us will be affected by it in our lifetimes. And yet, living with dementia or caring for someone with the illness is not something many of us plan for. Phillips has said that both her parents, her grandparents and her uncle had the disease: “It’s something I might have thought I’d get at 80. But I was still only 61 years old. I felt more angry than anything else.”

I’m very lucky that my work with Innovations in Dementia brings me into contact with many people who live with dementia, and I have learned much from listening to, and working alongside, them. So what would I want to say to Phillips?