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Nothing about Us, Without Us!


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Table of Contents

Introduction. 1. Dementia diagnosis - pointing the bone. 2. Diagnosis, drugs and determination. 3. Insider's view of dementia. 4. Dementia diagnosis from an 'insider's' perspective. 5. Dancing with dementia. 6.Nothing about us, without us! 7. A bumpy ride. 8. The support that I need. 9. Stigma and fear. 10. I'm still here! 11. Coming out of the shadow. 12. A decade of change. 13. Lisa and I. 14. Dementia prison. 15. Living life to the full. 16. Mind your language - getting it right! 17. There has to be a better way! 18. Come dance with me! 19. Dementia - an interesting ride! 20. Who was I? Who am I now? Who will I be when I die? 21. Pastoral care of people with dementia.

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The foremost dementia advocate addresses the key issues faced by people with dementia in inspiring and memorable terms

About the Author

Christine Bryden had a high-powered job in the Department of the Australian Prime Minister and was a single mother of three children when she was diagnosed with dementia in 1995. Since then, she has gone on to challenge almost every stereotype of people with dementia, speaking at national and international conferences and campaigning for self-advocacy. In 2003, she was the first person with dementia to be elected to the Board of Alzheimer's Disease International (ADI). Christine lives with her husband, Paul, in Brisbane, Australia. She is the author of 'Dancing with Dementia' and 'Who will I be when I die?', both published by JKP.


You must read Christine Bryden's book if you have any connection with dementia (and even if you do not, because at some point you will). Christine speaks to us elegantly and forcefully from that other "country" of dementia as one of its leading ambassadors. She humanizes this condition, and takes you along on her journey through this territory. No one can truly say that they "understand" dementia until finishing this stirring and totally candid volume. Do so - today. -- Cameron J. Camp, Ph.D., Director of Research, Center for Applied Research in Dementia, Ohio, USA
Christine's journey as a dementia advocate is truly remarkable. This collection of talks and presentations demonstrates the incredible progress that has been made as a result of her determination to make the world a more inclusive place for people living with dementia. I thank Christine for telling her story to the world, and share her hope that this book will help make this dream a reality. -- Marc Wortmann, Executive Director, Alzheimer's Disease International
Dementia is not a concept, an idea or a diagnostic category. It is a meaningful human experience that occurs within the lives of people who have hopes, dreams and expectations that are not bound by the limitations of failing neurology. In this book, Christine Bryden offers some deep insights into why we need to re-think dementia. Drawing on her own powerful narrative, she offers a way of re-narrating dementia which takes seriously the neurological, but refuses to be defined or reduced to it. As one reflects on the narratives and reflections presented within this book one is inevitably transformed, both in terms of one's thinking about dementia, but more profoundly in terms of realising the breadth and depth of what it actually means to be a human being and to live humanly in all circumstances. -- Professor John Swinton, Chair in Divinity and Religious Studies, University of Aberdeen, and author of 'Dementia: Living in the Memories of God'
Christine Bryden chronicles her two-decade journey living with a diagnosis of dementia, exploding myths and stereotypes along the way. Even in the face of cognitive struggles, Christine embodies personal growth, sharing her insights about the lived experience of dementia. Her inspirational journey of advocacy has evolved to co-founding an international movement on behalf of people who share the diagnosis, and more recently taking on traditional models of care and the need for inclusive communities. I can't wait for the next twenty years! -- G. Allen Power, MD, author of 'Dementia Beyond Drugs' and 'Dementia Beyond Disease'
Nothing About Us, Without Us! demonstrates powerfully that persons with dementia remain persons in the most fundamentally important ways. Christine Bryden, living with dementia for two decades, expertly teaches what helps and what hinders people diagnosed and communicates beautifully why the Golden Rule should be applied regardless of one's medical condition. The book will educate people with dementia, care partners, lay people, and professionals. -- Steven R. Sabat, PhD, Professor of Psychology, Georgetown University, author of 'The Experience of Alzheimer's Disease' and co-editor of 'Dementia: Mind, Meaning, and the Person'
Christine Bryden speaks and writes with the conviction gained through her experiences of living with and challenging this disease over two decades, since diagnosis. Issues of stigma, care, hope and ways of living effectively with dementia are just some of the important topics she addresses. This collection of talks with slides will form a valuable resource for many: for people who have dementia, for their families, for care providers, and certainly for the wider community. -- Elizabeth MacKinlay, Centre for Ageing and Pastoral Studies, St Mark's National Theological Centre, School of Theology, Charles Sturt University, Australia
Dementia is the public health issue of the 21st Century. It is the second leading cause of death in Australia, and, in a few short years, will be the leading cause of death of women. Nothing About Us, Without Us! questions our automatic responses to dementia, providing a much-needed voice offering inspiration to those who feel "the curse of the pointing-bone of diagnosis". Through personal experience, Christine Bryden identifies misconceptions and prejudices in the way we view and treat people with dementia. People facing a future with dementia will find in this book, an intelligent, positive and authentic voice. -- James Vickers, Professor of Pathology, University of Tasmania and Chair of the Scientific Panel of the Alzheimer's Australia Dementia Research Foundation
Christine Bryden is an inspirational teacher. In this book she takes us through lessons that are deeply honest and simply put, coming from her lived experience and her breathtaking emotional intelligence. This should be compulsory reading for all professionals, people living with dementia and families affected by dementia. There is no us and them. There is only us. -- Professor Dawn Brooker, Director of the Association for Dementia Studies, University of Worcester, UK and author of 'Person-Centred Dementia Care'
Christine Bryden, a person of great strength, a survivor with an indestructible spirit, a person living with dementia, invites us to "aspire to a new paradigm of dementia survival with dignity". The book is a chronicle of her life as an advocate who fights each day to retain her dignity and that of all people living with dementia. It is a testament of her consuming passion, to never let go, search for what remains and use it to the maximum. A compelling book for those who seek to better understand what it is like to walk in the shoes of a person with dementia. -- Frank J Schaper, Former CEO of Alzheimer's Australia WA Ltd, Alzheimer's Disease International Ambassador and Visiting Fellow of Queensland University of Technology

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