Abstract

How does it feel when someone you love develops dementia? How do you cope with the shock, the stress and the grief? Can you be sure that you and your family will receive the support you need?

In Telling Tales About Dementia, thirty carers from different backgrounds and in different circumstances share their experiences of caring for a parent, partner or friend with dementia. They speak from the heart about love and loss: 'I still find it hard to believe that Alzheimer's has happened to us,' writes one contributor, 'as if we were sent the wrong script.' The stories told here vividly reflect the tragedy of dementia, the gravity of loss, and instances of unsatisfactory diagnosis, treatment and care. But they contain hope and optimism too: clear indications that the quality of people's lives can be enhanced by sensitive support services, by improved understanding of the impact of dementia, by recognising the importance of valuing us all as human beings, and by embracing and sustaining the connections between us. 

This unique collection of personal accounts will be an engaging read for anyone affected by dementia in a personal or professional context, including relatives of people with dementia, social workers, medical practitioners and care staff.

These powerful stories should be read by everyone involved in health and social care, from commissioners designing services to those giving direct care and support. I hope they will also be read by those who have had no previous contact with dementia, to help combat the stigma it still carries through lack of public awareness... The accounts are moving, engrossing, sprinkled with quirky humour, and truthful. There is both warm praise and angry criticism of services. I hope the book will play its part alongside the National Dementia Strategy to help eradicate some of the glaring bad practice it highlights... Vivid personalities shine through, reminding us that every person with dementia, every carer and every caring relationship, is different and individual, therefore services need to be sensitive, personal and flexible.
Dementia Care
These personal accounts by family carers, harrowing, distressing, but also inspiring and uplifting, will have you weeping one moment and laughing the next, as they describe struggling to manage situations that range from horrific to comical. How do you cope alone with your loved one's slow loss of rational thought and behaviour? You cannot - and you need not. The single most valuable achievement of this book is to tell carers they are not alone. The more of us there are, the stronger we become, and the better we can fight for our loved ones in the face of this cruel disease.
John Suchet, broadcaster, who is caring for his wife Bonnie, who has dementia.
This book will speak to other carers who will empathise with or learn from different chapters. However, the narratives across the chapters also provide strong lessons and experiences that both increase understanding and highlight key issues for a much wider audience - particularly for formal carers, service developers, policy makers, commissioners and anyone with an interest in improving the experience of living with dementia for both the person and their close friends and family. Central to this is the importance of relationships in all their complexity and form: the book illustrates this fundamental importance beautifully.
The Journal of Ageing and Society, Heather Wilkinson, Co-Director of the Centre for Research on Families and Relationships and Research Director for the School of Health in Social Science at the University of Edinburgh
The stories of these carers - sisters, brothers, husbands, wives, lovers and friends - are not confined to the painful subject of dementia: the book is also about anger, loss, love and loyalty. It's both powerful and moving.
Diana Melly, writer and widow of jazz legend George Melly, who had dementia in his final years
These accounts are a tribute to the abiding insistence on according dignity to every one of us until our last breath. Reading these stories will make us all, in the words of one of the contributors, "determined to make a difference".
Joanna Trollope, OBE, Patron 'For Dementia'
As a practitioner in dementia support, I found this book inspiring. With dementia rising up the healthcare agenda and the government's dementia strategy acknowledging the scale of future needs, it is important to listen to the voice of people living with dementia in service planning.
Nursing Standard
... this is a genuinely moving document, and the wealth of experience drawn on merits careful consideration. Books like this will go some way to redressing that balance.
Working with Older People
Telling Tales About Dementia: Experiences of Caring is a book of stories about real relationships touched by dementia...This compilation is highly readable... It is helpful for people with a relative with dementia, enabling them to see they are not alone. My hope is, however, that it will also be read by professionals who come into contact with families; it would be a fitting reward for their courage and honesty, if the carers who contributed were able to see it positively influencing the experiences of other carers.
Julia Burton-Jones, freelance care home consultant, R&RA
This anthology of carers' stories possesses the gift to take readers on a rollercoaster of emotion. The honest accounts of families caring for partners and parents living with dementia are inspiring, uplifting and yet at times heart-wrenchingly tragic. It is a captivating and essential read for all professionals trying to understand and help families caring for a loved one living with dementia. Echoes of indifference in the face of family devotion and upset stand in distressingly sharp contrast. I was left in no doubt that all health and social care practitioners, including those working in care homes who read these tales will be unable to stop themselves looking at what they do and asking can we not do better?
Dr Graham Stokes, Consultant Clinical Psychologist
Every one of these stories is a jewel-house of observation, dedication and feeling. Every one can and should be used to teach us as individuals and in reflective groups - be we informal (family) carers or professionals... This is a wonderful book which we must be thankful for and make good use of.
For Dementia Plus
Despite the increasing number of books on caring for a person with dementia, few capture the perspective of the carer to the degree managed by Lucy Whitman in her edited book Telling Tales about Dementia... Together the real-life stories provide a range of insights into: the grief and stress of losing a loved one to dementia ('Living with loss'); managing the challenges of dealing with the care system ('Dispatches from the battlefield'); and maintaining communication with a relative with advanced dementia and/or keeping them company at the end of life ('Keeping in touch, letting go'). These are supplemented by a very useful contextualising introduction by the editor, and some recommended reading and a list of helpful organisations at the end. These moving and personal stories, which are a mixture of the voices of the carers themselves and a transcription of a discussion with the editor, evidence the complexity, pain and variety of both "having dementia" and dementia caring experiences. The fact that some of the tales are accompanied by photographs, that one contribution is in the form of a poem and that the tales are from carers from a variety of backgrounds strengthens the book's capacity to provide a genuine cornucopia of human experience "warts and all"... One the most powerful dimensions of the book is its multiple perspectives and inspiring portrays of astonishing levels of stoicism, devotion, resilience and love displayed by "ordinary" people for their relatives and friends with a chronic, disabling and distressing condition...The book unashamedly adopts the subjective experience of dementia caring as its standpoint and offers a rich source of raw evidence about what it is like to care for someone you love with dementia in the real world, right now.
Quality in Ageing and Older Adults
Lucy Whitman is a writer, editor and trainer, and a former teacher in further education. She cared for her mother who had dementia, and this inspired her first anthology, Telling Tales About Dementia: Experiences of Caring, a collection of personal accounts by people who have looked after someone with dementia. Her new anthology, People with Dementia Speak Out, a collection of personal accounts by people with a diagnosis of dementia, will be published by Jessica Kingsley Publishers in 2015. Lucy has worked extensively with family carers, and writes regularly for the Journal of Dementia Care. She works as Community Engagement Officer for Healthwatch Enfield.
There is much to be learned from these thirty moving and beautifully written stories of carers looking after people they love and who have dementia. The accounts are all very different and each has something special to tell us about the centrality of relationships and life histories in understanding and caring for anyone.
Standards for Practice
Telling Tales About Dementia: Experiences of Caring offers experiences from some thirty care givers from different backgrounds and circumstances who describe their experiences caring for a partner, parent or friend with dementia. Any affected by dementia in either a professional or personal realm will find this collection eye-opening, engaging, and educational.
The Midwest Book Review
I know of no book at all comparable to this recent Jessica Kingsley publication... Telling Tales about Dementia will be a great encouragement to other carers. They will feel in the company of those who do understand the agony and the poignancy from the inside. It also has so much to contribute to the understanding and training of professional carers. It is devoutly to be hoped that, as the government's national dementia strategy is implemented, it will address some of the vital concerns so vividly depicted in this book.
Christian Council on Ageing
... these 208 pages (with additional glossary, lists of recommended reading and helpful organisations), does have genuinely uplifting moments, sprinkled among the diverse and informative case studies: this is a genuinely moving document, and the wealth of experience drawn on merits careful consideration... Given present estimates that there are 700,000 individuals in the UK experiencing some form of dementing illness, books such as this serve a valuable purpose.
Working with Older People, Stephen Weeks, Book Reviews Editor