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What the hell happened to my brain? Paperback – January 21, 2016

by Kate Swaffer (Author)
4.3 out of 5 stars 50 ratings
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Kate Swaffer was just 49 years old when she was diagnosed with a form of younger onset dementia. In this book, she offers an all-too-rare first-hand insight into that experience, sounding a clarion call for change in how we ensure a better quality of life for people with dementia.

Kate describes vividly her experiences of living with dementia, exploring the effects of memory difficulties, loss of independence, leaving long-term employment, the impact on her teenage sons, and the enormous impact of the dementia diagnosis on her sense of self. Never shying away from difficult issues, she tackles head-on stigma, inadequacies in care and support, and the media's role in perpetuating myths about dementia, suggesting ways in which we can include and empower people with the diagnosis. She also reflects on the ways in which her writing and dementia advocacy work have taken her on a process of self-discovery and enabled her to develop a new and meaningful personal identity.

Kate's powerful words will challenge misconceptions about dementia, and open our eyes to new ways of supporting people with the diagnosis. A must read for people with dementia and their families as well as for professionals and carers.

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  1. Print length
    392 pages
  2. Language
    English
  3. Publisher
    Jessica Kingsley Publishers
  4. Publication date
    January 21, 2016
  5. Dimensions
    5.51 x 0.98 x 8.5 inches
  6. ISBN-10
    1849056080
  7. ISBN-13
    978-1849056083
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Editorial Reviews

Review

Before being diagnosed with younger onset dementia, Kate Swaffer loved to study, to learn, to be of service to others. Now living with dementia, she has not changed in these respects whatsoever. Her wonderfully illuminating book should be required reading for people and families living with dementia. Author: Steven R. Sabat, Ph.D., Professor of Psychology, Georgetown University, Washington D.C., U.S.A.

The scope of Kate's book is beyond that which anyone else with dementia has attempted. She reflects upon loneliness, guilt, driving, aged care, writing and advocacy. Author: John Killick Source: Australian Journal of Dementia Care

Janet Baylis, Manager of our Dementia Knowledge Centre, says, 'There are few books written by people with dementia. This is one that I would strongly recommend to anyone with a recent diagnosis who is searching for answers about living well with their condition.' Author: Janet Baylis Source: Alzheimer Society Book Group

Keith Oliver, a Society ambassador who has Alzheimer's, says the book covers areas that he hasn't seen written about in such personal and emotive ways elsewhere. He adds, 'The structure of short, crisp chapters works extremely well and gives the author the opportunity to structure her thinking and experience in a clear way.' Author: Keith Oliver Source: Alzheimer Society Book Group

Laura Venables, who works on the Society's Engagement and Participation programme, was fascinated by Kate's account of 'prescribed disengagement'. This is how Kate describes the advice she says she was given - but ignored - to withdraw from her life and work after she was diagnosed. Laura says, 'Kate challenges the assumptions that are continuously brought out to define living with dementia. 'She openly illustrates her experiences of striving to continue life as she lived it the day before she was diagnosed, and of all the opportunities that she has become involved with since diagnosis - it's exciting stuff!' Author: Laura Venables Source: Alzheimer Society Book Group

Book Description

This much-anticipated book from prolific blogger and dementia advocate Kate Swaffer will challenge common assumptions about dementia and highlight the key issues that impact on those living with the diagnosis

Product details

  • Publisher ‏ : ‎ Jessica Kingsley Publishers; 1st edition (January 21, 2016)
  • Language ‏ : ‎ English
  • Paperback ‏ : ‎ 392 pages
  • ISBN-10 ‏ : ‎ 1849056080
  • ISBN-13 ‏ : ‎ 978-1849056083
  • Item Weight ‏ : ‎ 12.8 ounces
  • Dimensions ‏ : ‎ 5.51 x 0.98 x 8.5 inches
  • Customer Reviews:
    4.3 out of 5 stars 50 ratings

Customer reviews

4.3 out of 5 stars
50 global ratings

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Customers say

Customers find the book's narrative moving and insightful. They appreciate its value for dementia sufferers, with one customer noting it's particularly helpful for caregivers.

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4 customers mention "Narrative quality"4 positive0 negative

Customers appreciate the narrative of the book, finding it moving and insightful, with one customer noting how interesting it is to see the perspective from the other side.

"...not just older people, but younger people as well, this book is very important as it comes from someone who has experienced it and continues to..." Read more

"A moving narrative that captures one woman's journey into young-onset dementia...." Read more

"Very insightful, well written book!" Read more

"It is interesting to see it from the other side. I thank Kate for writing the book for my information" Read more

3 customers mention "Dementia sufferer"3 positive0 negative

Customers find the book helpful for dementia sufferers, with one customer noting it is excellent for anyone with any kind of dementia, while another mentions it is invaluable for managing the situation.

"...Awareness of what to expect and how to react or manage the situation are invaluable. Thanks for Kate." Read more

"The author lays out a valiant argument for living beyond dementia, however this is fine in the early stages but somewhat unrealistic as disease..." Read more

"Excellent for anyone with any kind of dementia" Read more

Top reviews from the United States

  • GYHT
    5.0 out of 5 stars Living & Thriving in spite of Dementia
    Reviewed in the United States on September 14, 2016
    Verified Purchase
    There are very few people in the world Iike Kate Swaffer. With the awareness that dementia strikes not just older people, but younger people as well, this book is very important as it comes from someone who has experienced it and continues to thrive in spite of a diagnosis that was delivered to her. I was fortunate enough to meet and film Kate, who now devotes her life to expanding the conversation on dementia and how it affects people, and improving the rights and dignity of those with dementia. She is what I would call a "rock star" in the world of dementia advocacy - there are few people I would imagine who live and walk the talk like she does. If you know of anyone living with young onset or mild dementia, this is an important book to get. Seek out her work and learn more about how her efforts to empower people with dementia.
    4 people found this helpful
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  • Doc 4 Cavity
    5.0 out of 5 stars Invaluable for LBD Sufferers
    Reviewed in the United States on December 15, 2018
    Verified Purchase
    I have terminal LBD and the book was very helpful for me and my care giver. Awareness of what to expect and how to react or manage the situation are invaluable. Thanks for Kate.
    Helpful
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  • hilda r. mendez
    3.0 out of 5 stars Unrealistic expectations as disease progresses.
    Reviewed in the United States on December 16, 2016
    Verified Purchase
    The author lays out a valiant argument for living beyond dementia, however this is fine in the early stages but somewhat unrealistic as disease progresses and person becomes more dependent on others.
    One person found this helpful
    Helpful
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  • GuilfordGraduate
    5.0 out of 5 stars A moving narrative that captures one woman's journey into young-onset ...
    Reviewed in the United States on May 3, 2016
    Verified Purchase
    A moving narrative that captures one woman's journey into young-onset dementia. A must read for anyone recently diagnosed who is searching for answers. Swaffer makes clear that life can be fully lived despite the setbacks and challenges that Alzheimer's presents.
    Helpful
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  • Kristine Fisher
    4.0 out of 5 stars Living Beyond Dementia by Kate Swaffer (and that really is an awesome name) is a free NetGalley ebook that I read ...
    Reviewed in the United States on February 7, 2016
    What the Hell Happened to My Brain?: Living Beyond Dementia by Kate Swaffer (and that really is an awesome name) is a free NetGalley ebook that I read in early December. Continuing on my medical/mental non-fiction book, I thought I'd take a look at this Austrailian book for a new perspective on young onset dementia.

    Swaffer uses short 1-2 page chapters to look at dementia from just about every angle. Her experiences is civic community groups and associations add to her credibility as an advocate and makes this book a necessary, no, critical read for the recent diagnosed and/or their loved ones.
    One person found this helpful
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  • Melba
    5.0 out of 5 stars Recommend Reading
    Reviewed in the United States on March 3, 2016
    Verified Purchase
    Very insightful, well written book!
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  • Anne Fargusson
    5.0 out of 5 stars Five Stars
    Reviewed in the United States on September 26, 2016
    Verified Purchase
    Excellent for anyone with any kind of dementia
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  • Wendy Sanchez
    5.0 out of 5 stars Thank you Kate ! "Nothing about us without us"
    Reviewed in the United States on March 10, 2016
    Verified Purchase
    So clearly and compassionately laid out it should be required reading for all health care professionals and therapists.
    2 people found this helpful
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Top reviews from other countries

  • elizabethxcvnm,,hjjjkkk
    5.0 out of 5 stars My brain took a detour
    Reviewed in Australia on August 26, 2019
    Verified Purchase
    I work in secure dementia and i have respect for my patients and liked reading this book and would like to help patients to help themselves as much as they can
    Report
  • Patricia Burns
    5.0 out of 5 stars The inspirational story of an exceptional woman who insists on living beyond dementia!
    Reviewed in the United Kingdom on January 21, 2017
    Verified Purchase
    This is a rich and comprehensive account of Kate's story as an adult diagnosed with younger onset dementia. We are told of Kate's early symptoms, her diagnosis, her battle with grief and with the expectations of society that she should give up her work, study and other aspects of her former life, that she should go home and prepare to deteriorate and die. Kate has done no such thing. University study, activism on behalf of all people living with dementia, world travel and the making and keeping of many new friends have built her an army of admirers across the world and won her many awards in her native Australia .
    This book is honest about the struggles she faces to keep living an ordinary life at home, the effect of her diagnosis on family and friendships, and the ways in which she strives to gain improvements to the lives and the care available for those living with dementia,
    Her inspirational chapter on resilience and memory teaches us all how to live.
    Report
  • Kindle Customer
    5.0 out of 5 stars Fantastic Kate
    Reviewed in Australia on May 18, 2016
    Verified Purchase
    Kate is amazing and so is her book
    Report
  • Amazon Customer
    5.0 out of 5 stars Five Stars
    Reviewed in the United Kingdom on March 10, 2016
    Verified Purchase
    Fascinating and informative
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  • Amazon Customer
    2.0 out of 5 stars which would have reduced the irritating and unnecessary repetition. Then
    Reviewed in the United Kingdom on April 27, 2016
    Verified Purchase
    Perhaps I was expecting too much, but I found the book disappointing, depressing and too long, with far too much emphasis placed on fear, guilt, grief and other negatives. The prescribed disengagement described by the author must have been difficult for her to handle, but it's a concept unfamiliar to me in the UK However, I acknowledge the right of the author to see her life in that way, of course. Perhaps the book should come with some kind of warning that much of the content and opinion apply to Australia only. I felt alienated by many of the sweeping generalisations, assumptions and presumptions made by the author, since they certainly don't form part of my experience. I wasn't expecting it to be so prescriptive, confrontational and dictatorial either. The book would have benefited from an Editor's input, which would have reduced the irritating and unnecessary repetition. Then, the Author's Note about the extensive repetition being 'dementia friendly' would have been rendered superfluous.
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