On 1 September, a new book called "Challenging Assumptions Around Dementia: User-Led Research and Untold Stories" was published. The co-authors are people affected by different forms of dementia and members of the Patient and Public Involvement Group of NHS Scotland’s Neuroprogressive and Dementia Network. Their book seeks to challenge preconceived ideas that dementia only affects older people, that it’s all about memory loss and that a dementia diagnosis represents the end of someone’s active life. Their work was brought together by research psychologist Dr Rosalie Ashworth who leads the Partners in Research initiative, focusing on getting those with lived experience to become more involved in informing research – and moving the focus of research from the illness to the people affected by it. Dr Ashworth said: “A huge part of what the co-authors are saying is that your life will be different - but that doesn't mean it's over.
They want to encourage people to find what is meaningful to them and to create a new life with the diagnosis of dementia." “The plan had been to focus on the different types of dementia and the different experiences people had. But when we all came together, that became just one chapter and so many other things needed to be included.” One of the twelve co-authors, Agnes Houston, former Vice-chair of the European Working Group of People with Dementia, said she hopes that every NHS professional will read the book. Her dementia affects her senses and, even after her diagnosis, professionals were telling her she couldn’t possibly have dementia, forcing her to go through the process to have her diagnosis confirmed a second time: “I’ve never looked back. I decided – what do they know? It’s my diagnosis. It’s my life. I will live it the way I want to.” You can find the book (open access), here: https://link.springer.com/book/10.1007/978-3-031-27223-3
