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New dementia awareness book launched at V&A Dundee now available as free download

New dementia awareness book launched at V&A Dundee now available as free download

11th September 2023

A new NHS-inspired book that foregrounds first-hand experiences of dementia while dispelling myths around it has successfully launched at V&A Dundee – and is now available as a free download

The event, which took place on Friday 1 September, saw Challenging Assumptions Around Dementia: User-Led Research and Untold Stories formally unveiled to the public.

Thanks to open access funding from the Chief Scientist Office (CSO) of Scottish Government, it is also now available in complimentary PDF and EPUB formats as well as a hardback physical version, from Palgrave Publishers.

The book has already hit over 1000 downloads.

The event was hosted by the NHS Research Scotland Neuroprogressive and Dementia Network (NRS NDN) and the British Gerontology Society.

The project commenced last year when NRS NDN’s Patient and Public Involvement (PPI) group first embarked on writing the book.

The group, known as Partners in Research have since spent months sharing their experiences of different types of dementia and these have been collated into one volume.

Six of the co-authors are living with dementia, and six of the co-authors support, or have supported, someone living with dementia as unpaid carers. The event saw them present the key learnings from their own experience, as well as what it has been like to collaborate on the book.

Included in Challenging Assumptions Around Dementia are a wide spectrum of experiences – from Alzheimer’s disease, Frontotemporal dementia, and Vascular dementia to Posterior Cortical Atrophy, Semantic dementia, and Lewy body dementia.

The two-hour event was led by the co-authors with lived experience and included a question-and-answer panel discussion.

Co-author Martin Robertson said: “Most people’s views of dementia are people sitting in chairs and people not able to do much. But certainly, nowadays there’s a lot more early diagnosis.

“But my dementia, in particular my memory and brain and cognitive functions, are still quite good.”

Fellow co-author and Lead for Partners in Research, Dr Rosie Ashworth’s work as a dementia and neuroprogressive researcher covers the whole of Scotland, lending her a wide spectrum of knowledge and experiences which she has shared in the book.

She said: “Everyone involved in this project is immensely proud of it – not simply because it’s been published, but also because it’s considered a major accomplishment for all concerned.

“Significant barriers were overcome in doing so – all meetings took place online, resulting in 50 hours of discussion and several hundred thousand words being carefully transcribed to bring individual voices authentically to life.

“After a lot of hard work and a focused team effort, it’s now incredibly exciting and satisfying that the book is a reality and that our collective message is now being firmly conveyed.

“We hope it will have a positive impact, not only for those living with a diagnosis and their families – but also for those in the medical profession looking to gain a better understanding.”

Rosie added: “People with dementia often feel their condition is not understood, that their individual experiences are not listened to, and that a lot of assumptions are made.

“We believe the book goes some way to addressing those misunderstandings and misconceptions about what having dementia, and caring for those with it, truly means.

 “It’s fundamentally an effort to break down stigma around the condition, change the too often accepted narrative, while encouraging greater discussion and engagement.”

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