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People with Dementia Speak Out


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Table of Contents

Introduction. 1. Grandad - can you go and get a new brain? Graham Browne. 2. Are you sure you've got Alzheimer's? Alex Burton. 3. A doctor in search of a diagnosis. Jennifer Bute. 4. I'll ken it when I see it. Ross Campbell. 5. Liberation! Dizi Conti. 6. I'm gone older. Everything change. Romanina Contucci. 7. Riding the rollercoaster. Carol Cronk. 8. I still remember. Halide Eames. 9. I never get tired of dancing. Midge Flint. 10. They deal with everybody as an individual. Clarice Hall. 11. One place to another. Abdul Haque. 12. A double diagnosis. Brian Hennell. 13 Anybody been kind to me, it stays with me. Pearl Hylton. 14. Love me for who I am. Ann Johnson. 15. Down with Dementia. Sylvia Kahn. 16. Deciding to resist. Lazarus. 17. You keep-a-knockin' but you can't come in. Alex Lindsay. 18. The doors of perception. Edward McLaughlin. 19. Journey into Alzheimerland. Peter Mittler. 20. Who's afraid of the flying bombs? Lorna Moore. 21. Time to break the taboo. Rukiya Mukadam. 22. Something better. Mary Tall. 23. A Psychiatrist with Dementia. Daphne Wallace. Appendix I: Editing Challenges. Appendix II: Narrative Based Medicine. Appendix III: LGBT People with Dementia. Afterword by Graham Stokes.

Promotional Information

This anthology of personal accounts reveals the tremendous diversity of people living with dementia

About the Author

Lucy Whitman is a writer, editor and trainer, and a former teacher in further education. She cared for her mother who had dementia, which inspired her first anthology, Telling Tales About Dementia: Experiences of Caring, also published by JKP. Lucy has worked extensively with family carers, and writes regularly for the Journal of Dementia Care. She lives in London, UK.


People with Dementia Speak Out is a celebration of people living, loving, learning, changing and growing with dementia. It is a rich and multi-dimensional collection of first-person accounts from people living with dementia. Each story combines people's reflections on their life stories - which are hugely diverse - woven together with accounts of their growing awareness of difficulties and the impact of dementia on their lives. These stories are about identities and how dementia becomes another aspect of people's lives - but not the only aspect. This collection has been thoughtfully edited by Lucy Whitman, who usefully shares her reflections on a complex editorial process that succeeds in retaining the diversity of experience, personality and language style that in turn helps to convey the realities - the highs and lows of how dementia is incorporated into people's lives and identities - and the sheer resilience with which people respond to such major life changes. People's voices, wishes, hopes and concerns ring out from every page of this book. This is a must read for those who want to hear and understand the voices of people who are living with dementia.-- Rachael Litherland, Co-director, Innovations in Dementia CIC
Although I have read many books on dementia in the four years since I was diagnosed with Alzheimer's disease, seldom have I engaged with one which has informed and moved me as much as this one. Lucy and her co-authors will inspire, challenge, and yet reassure you in equal measure, whether you are affected by dementia personally, or are a professional caring for us. The people in this book "speak out" through story-telling, conveying a human narrative around living well with dementia. The message they all so sincerely convey is based upon everyone being different, with personhood at the centre, whilst sharing a common bond and a desire to reduce stigma and misunderstandings, and replace them with hope and belief. -- Keith Oliver, Dementia Service User Envoy, Kent & Medway NHS and Social Care Partnership Trust
Everyone working in dementia care should read this important book. Powerful and moving, these stories drive home what must be the guiding principle of all our work: to see and know each person as an individual all the way from first contact to later difficult times. Many contributors relate a stark lack of support after diagnosis but there are bright lights of positive services too, highlighting especially how vital mutual support groups can be. -- Sue Benson, Managing Editor, Journal of Dementia Care
In a better world, Lucy Whitman's book would be required reading in schools. It brings alive the experience of living with dementia through the stories of people from all walks of life in the UK, and eloquently illustrates the theme of the 2013 report by the All Party Parliamentary Group on Dementia: Dementia does not discriminate. Importantly, Lucy has made every effort to ensure all the contributors tell their story in their own way. A valuable, evocative and commendable testimony to the importance of seeing the person, not the dementia. -- David Truswell, NHS Senior Project Manager & Trustee of Culture Dementia UK
It is clear from this book that people living with dementia are engaged in a daily struggle to retain their distinctive individual personalities and identities linked to their own specific histories and life stories. It is therefore gratifying to see the care, skill and subtlety deployed in this volume to capture the unique voices and turns of expression of the participants, including where these occasionally conflict with the conventions and norms of written Standard English. -- Dr Roxy Harris, Centre for Language, Discourse & Communication, Kings College London

Make no mistake, this is a major work of scholarship, as well as taking us several steps forward in understanding the significance of dementia to individuals and their need for appropriate help. In her first book, Telling Tales about Dementia, Lucy Whitman established herself as a visionary communicator; this book raised awareness and respect for people with dementia and their families. It has influenced how we respond to their needs and has helped many, through the sharing and comparing of stories.In People with Dementia Speak Out she opens the book on life as seen by individuals actually living with dementia, bringing together the perspectives of 23 authors. She explains her methodology and influences in three illuminating appendices. The range is wide, with a mixture of older people and those who have early onset dementia, and contributors born in many different countries.These are not tales of sorrow and suffering. In every one, the main theme is the whole life story of the PERSON. Dementia comes as but one experience, one part of one period - the final period - woven onto and into a fabric which has lasted years.There is much wisdom here. These stories will bring smiles and tears, anger and determination. Most importantly they will spread a better understanding - and hopefully we will use this to best effect.

-- Professor David Jolley, Consultant Psychiatrist and Honorary Reader in Old Age Psychiatry, University of Manchester
I read Lucy Whitman's first book - Telling Tales About Dementia: Experiences of Caring - and found it riveting. I frequently recommend it as essential reading for those working in this field. It presents an expertly edited text that accurately reflects a range of carer experiences. Shortly after its publication she mentioned to me that she was considering a 'sister' text that portrayed the experiences and narratives of people with dementia to which I stated that this would be an excellent accompaniment to Telling Tales. We are starting to see an emerging number of books that give first hand narrative to what it is to have dementia. People with Dementia Speak Out!, Lucy's second edited text, makes a valuable contribution to this small but growing body of knowledge. -- Karen Harrison Dening, Director of Admiral Nursing, Dementia UK

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