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Dementia awareness book supporting more person-centred research hits 20k downloads milestone
7th March 2025
An NHS-inspired book foregrounding first-hand experiences of dementia while dispelling myths around it has been downloaded 20,000 times
The NHS Research Scotland Neuroprogressive and Dementia Network (NRS NDN) announced on World Book Day (6 March) that ‘Challenging Assumptions Around Dementia: User-Led Research and Untold Stories’ had hit the significant milestone.
Thanks to open access funding from the Chief Scientist Office (CSO) of Scottish Government, it became a free download available to all in PDF and EPUB formats as well as a hardback physical version, from Palgrave Publishers.
Co-author and Lead for Partners in Research, Dr Rosie Ashworth said: “There are lots of books about dementia, so we are honoured that people have chosen ours.
“It’s a testament to the great collaborative work that went into it, and we remain immensely proud of that huge effort from all involved in order to present co-produced dementia research between people with lived experience, academics, and healthcare professionals.
“Six of the co-authors were living with dementia, and six of the co-authors support, or supported, someone living with dementia as unpaid carers.
“Significant barriers were also overcome in compiling the book — from 50 hours of discussion taking place online to several hundred thousand words being carefully transcribed to authentically bring individual voices to life.”
‘Challenging Assumptions Around Dementia’ was formally unveiled to the public at a V&A Dundee launch event in September 2023, hosted by NRS NDN and the British Gerontology Society, immediately generating 1,000 downloads.
The project commenced in 2022 when NRS NDN’s Patient and Public Involvement (PPI) group first embarked on writing the book.
Partners in Research spent months sharing their experiences of different types of dementia and these were subsequently collated into one volume.
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.
Responding to the 20,000 milestone, one of the co-authors commented: “What an amazing response — I am totally amazed at how far and wide it has gone.”
Another said: “What brilliant news. It makes me very happy. Even though I felt I was a minor contributor, I felt privileged to be part of such a valuable group.”
Rosie continued: “After a lot of hard work and a focused team effort, it’s gratifying that the book’s collective message continues to 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.
“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 and change the too often accepted narrative, while encouraging greater discussion and engagement.”
Rosie’s work as a dementia and neuroprogressive researcher covers the whole of Scotland, lending her a wide spectrum of knowledge and experiences which she shared in the book.
Partners in Research continues to be very active, including encouraging its group for people with experience of dementia to help spearhead the creation of a questionnaire over the past few months. This will aim to ask key questions that have come up during their involvement in the group with a focus on reasons why people may or may not take part in PPI or co-research; knowledge of dementia; and experiences of care.
Partners in Research also recently held an event at Dynamic Earth in Edinburgh on 20 February for people living with, or supporting someone with, Parkinson’s disease. Others with lived experience of Parkinson’s were invited to join.
Together, attendees looked at a draft ‘Clinicial Trial Companion Guide’ which the group has been developing over the past six months and discussed different ways to build on it, including space to record individual stories.
It is hoped that the final version of the guide will help to support people with Parkinson’s disease through clinical trial research.
