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What the hell happened to my brain?: Living Beyond Dementia
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.
340 pages, Kindle Edition
First published December 21, 2015
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85 people want to read
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Displaying 1 - 8 of 8 reviews
March 7, 2016
"Dementia is the only terminal illness I know of where people are told to go home and give up, rather than to fight for their lives."
If you want to know what it's like to have dementia, read this book. If you're the caregiver, friend, spouse, coworker, employer or doctor of someone with dementia, read this book.
Kate Swaffer is, as far as I'm aware, the only person with dementia to write a book about it, and her unique perspective is invaluable. It's not a clinical description, nor is it a depressing review of a slide from individuality into nothing. She covers the myths, the impact of grief and loneliness, how it affects work, language, family members, even driving.
She wrote it because people with dementia are marginalized, under-represented and have decisions made about them in which they have no say. She shares the frustrations of the diagnosis (as well as the frustrations from dementia) and how isolating, frightening and demoralizing it can be, especially early-onset. She uses effective analogies to reach out to each one of us, giving thoughtful insights.
As I read, the first few chapters were very difficult. The prospect of becoming dyslexic, and then eventually being unable to read or write, is one I fear, along with forgetting the names and faces of my friends and family, but I'd never considered forgetting how to put on a shirt. It's a scary prospect.
She says the Dementors from Harry Potter, who suck out souls, are well named, and that you not only lose your soul but also your dignity. People talk about you and around you, view you as half-empty or think because you can't - or don't - speak that you have no opinion and have no rights. You are stigmatized, the butt of jokes, abandoned by friends and family who have no support and don't know how to interact with you. If you are capably managing your symptoms, or in the early stages, you are often disbelieved because the stereotypes are all people know.
I continued to read, and found myself understanding the importance of signs, of visitors signing in, of not interrupting or "helpfully" offering vocabulary when the speaker stalls or pauses. (I'm beginning to compare it to talking with a toddler: it can be frustrating to wait patiently for them to finish, but interrupting is more frustrating for them and takes away any control they have. This is my comparison though.)
Kate Swaffer is an incredible woman. Diagnosed at 49 with early-onset dementia, she went on to earn three university degrees, speak at conferences and be an advocate for people worldwide with diagnoses of dementia. This book contains many recommendations that will advance the care and treatment of the people while also helping to manage the disease. Grief counseling seems obvious - it's a terminal diagnosis, so why is it not offered? If 6-9% of all dementia cases (Australia, 2014) are people living with early-onset dementia, why has no provision been made for their support and case? A similar number of people are living with multiple sclerosis, yet they are not ignored. It has a life-changing impact on the entire family, and this should not be taken lightly, so support and counseling should be available. Early diagnosis and management of the symptoms will increase choices and offer more effective interventions. Prescribed Disengagement(R) is the norm right now, yet it is the worst possible advice. (I've seen its effects myself.)
Since reading this book, I've become more aware of how dementia is portrayed all around us, and how misunderstood it is. I've realized the mistakes I made in the past, the assumptions I made, and how I can modify my behavior in future. And I hope that if I ever receive this diagnosis, that those I interact with will already be benefiting from Kate Swaffer's intercessions and recommendations, that the treatment of dementia in future will be far removed from its current incarnation.
Disclaimer: I received a free copy from NetGalley in exchange for an honest review.
If you want to know what it's like to have dementia, read this book. If you're the caregiver, friend, spouse, coworker, employer or doctor of someone with dementia, read this book.
Kate Swaffer is, as far as I'm aware, the only person with dementia to write a book about it, and her unique perspective is invaluable. It's not a clinical description, nor is it a depressing review of a slide from individuality into nothing. She covers the myths, the impact of grief and loneliness, how it affects work, language, family members, even driving.
She wrote it because people with dementia are marginalized, under-represented and have decisions made about them in which they have no say. She shares the frustrations of the diagnosis (as well as the frustrations from dementia) and how isolating, frightening and demoralizing it can be, especially early-onset. She uses effective analogies to reach out to each one of us, giving thoughtful insights.
As I read, the first few chapters were very difficult. The prospect of becoming dyslexic, and then eventually being unable to read or write, is one I fear, along with forgetting the names and faces of my friends and family, but I'd never considered forgetting how to put on a shirt. It's a scary prospect.
She says the Dementors from Harry Potter, who suck out souls, are well named, and that you not only lose your soul but also your dignity. People talk about you and around you, view you as half-empty or think because you can't - or don't - speak that you have no opinion and have no rights. You are stigmatized, the butt of jokes, abandoned by friends and family who have no support and don't know how to interact with you. If you are capably managing your symptoms, or in the early stages, you are often disbelieved because the stereotypes are all people know.
I continued to read, and found myself understanding the importance of signs, of visitors signing in, of not interrupting or "helpfully" offering vocabulary when the speaker stalls or pauses. (I'm beginning to compare it to talking with a toddler: it can be frustrating to wait patiently for them to finish, but interrupting is more frustrating for them and takes away any control they have. This is my comparison though.)
Kate Swaffer is an incredible woman. Diagnosed at 49 with early-onset dementia, she went on to earn three university degrees, speak at conferences and be an advocate for people worldwide with diagnoses of dementia. This book contains many recommendations that will advance the care and treatment of the people while also helping to manage the disease. Grief counseling seems obvious - it's a terminal diagnosis, so why is it not offered? If 6-9% of all dementia cases (Australia, 2014) are people living with early-onset dementia, why has no provision been made for their support and case? A similar number of people are living with multiple sclerosis, yet they are not ignored. It has a life-changing impact on the entire family, and this should not be taken lightly, so support and counseling should be available. Early diagnosis and management of the symptoms will increase choices and offer more effective interventions. Prescribed Disengagement(R) is the norm right now, yet it is the worst possible advice. (I've seen its effects myself.)
Since reading this book, I've become more aware of how dementia is portrayed all around us, and how misunderstood it is. I've realized the mistakes I made in the past, the assumptions I made, and how I can modify my behavior in future. And I hope that if I ever receive this diagnosis, that those I interact with will already be benefiting from Kate Swaffer's intercessions and recommendations, that the treatment of dementia in future will be far removed from its current incarnation.
Disclaimer: I received a free copy from NetGalley in exchange for an honest review.
May 10, 2016
Wow, what to say. Ms Swaffer is a poet and writer who was diagnosed with dementia before her 50th birthday. The book is a brilliant insight into what that feels like and how dementia patients are treated - both clinically and in society at large. We can never understand what it is like to be in Ms Swaffer's shoes (unless diagnosed of course) but this books goes a long way to helping us empathise.
"I started writing about dementia to stay inspired, to share my thoughts, to remind me of who I really am, and to keep tabs on my life, my thoughts and my philosophies so that later on, I would have a record of them, even if I could not remember what I was thinking or doing."
"The anticipation of the loss of my privacy and ability to care for myself is daunting. Knowing that my family and close friends will have to make decisions for my well being, and that strangers may be managing my daily care and the way I am dressed, is more than uncomfortable. Feelings of humiliation and sadness, and the loss 0f my dignity regularly try to take over my daily thoughts."
Those two quotes help us to understand what Ms Swaffer feels but it can never bring more than empathising and being aware of our own behaviours. The book talks about the medical and personal and beautifully captures the life of an intelligent women dealing with this diagnosis. She explains about advocacy and how few Boards and charities dealing with dementia actually have dementia patients involved. The book has excerpts from other advocates including Richard Taylor who is quoted as saying:-
"We're always a whole person in our own minds. Psychologists should be supportive of people's wholeness - their all-rightness."
I have certainly had my eyes opened and will deal with dementia people differently and I applaud the author for her courage. I will also sign up to her blog.
I was given copy of this book by Netgalley in return for an honest review.
"I started writing about dementia to stay inspired, to share my thoughts, to remind me of who I really am, and to keep tabs on my life, my thoughts and my philosophies so that later on, I would have a record of them, even if I could not remember what I was thinking or doing."
"The anticipation of the loss of my privacy and ability to care for myself is daunting. Knowing that my family and close friends will have to make decisions for my well being, and that strangers may be managing my daily care and the way I am dressed, is more than uncomfortable. Feelings of humiliation and sadness, and the loss 0f my dignity regularly try to take over my daily thoughts."
Those two quotes help us to understand what Ms Swaffer feels but it can never bring more than empathising and being aware of our own behaviours. The book talks about the medical and personal and beautifully captures the life of an intelligent women dealing with this diagnosis. She explains about advocacy and how few Boards and charities dealing with dementia actually have dementia patients involved. The book has excerpts from other advocates including Richard Taylor who is quoted as saying:-
"We're always a whole person in our own minds. Psychologists should be supportive of people's wholeness - their all-rightness."
I have certainly had my eyes opened and will deal with dementia people differently and I applaud the author for her courage. I will also sign up to her blog.
I was given copy of this book by Netgalley in return for an honest review.
February 6, 2021
My expectations for this book were probably unrealistic—I had hoped Swaffer's book would help me gain insight into my mom's experience with early-onset Alzheimer's (and potentially a peek into what I might expect myself as I am getting close to my mom's age at diagnosis). Swaffer describes this book as "part creative non-fiction, part academic, and part autobiographical in style", but it read as a repurposed thesis paper intermixed with cut-and-paste sections from her blog, presentations, emails, and Wikipedia definitions. There's not much personal, in terms of insight or reflection, other than the poems which precede each chapter. The structure of the book was frustrating as terms in earlier chapters, like her trademarked term Prescribed Disengagement, were discussed but not defined until 100+ pages in. Perhaps my mistake was reading this linearly instead of picking a few chapters of interest. I did enjoy Chapter 12: Dementia, Grief, and Loss: It's Very Complicated and Swaffer's presentation of Hiraeth/ homesickness and dementia.
Perhaps I wasn't the intended audience. I suspect the goal of the book was to convince healthcare workers and dementia board members to include patients with dementia in decision making. But this did lead to an odd marketing tone, with an emphasis on catch phrases like "living through dementia" and "prescribed disengagement (registered trademark).
Perhaps I wasn't the intended audience. I suspect the goal of the book was to convince healthcare workers and dementia board members to include patients with dementia in decision making. But this did lead to an odd marketing tone, with an emphasis on catch phrases like "living through dementia" and "prescribed disengagement (registered trademark).
July 31, 2020
What an amazing read. As a daughter whose Mum is living with dementia and a nurse who supports people living with dementia and their families, Kate’s blog has always inspired me. I wasn’t sure how I would go with the book, I read a lot, usually novels to escape the stress of my work reality. Bit Kate’s writing style is quite unique, I was prepared for some boredom, but that just didn’t happen. I read one to three chapters a night, always enjoyable and most times I learnt so much. I totally agree about all Kates recommendations and suggestions. The way we all think about the general management once a person is diagnosed with dementia needs to change, even the word management is wrong! I’ve recommended the book to so many of my colleagues and so hope the health system changes in the near future using Kate’s suggestions as a model. Calling Kate an inspiration is an understatement, the fact she describes her own ups and downs in life makes her even more likeable. A normal woman changing so much in an area often so resistant to change. Go Kate! Reading your book makes you feel
like we are old friends, thank you.
like we are old friends, thank you.
August 8, 2025
If you read only one book about dementia, have it be this book. Kate Swaffer is unique in that not only was she diagnosed with dementia, she was a professional writer beforehand.
If you want to read about the neurological process of dementia, puck up a text book. If you want to learn about living with dementia, this is the book.
She goes through so much. It works for someone that knows nothing about the disease, but also works well for a professional like me.
If you want to read about the neurological process of dementia, puck up a text book. If you want to learn about living with dementia, this is the book.
She goes through so much. It works for someone that knows nothing about the disease, but also works well for a professional like me.
April 28, 2016
This book gives the reader insight into how the author lived with her diagnosis of dementia, she was only 39 years of age. How we are allowed to understand how she takes life on a day to day basis, how it affected her family. How there are new ways of supporting people with the illness. BRILLIANT BOOK. HIGHLY RECOMMENDED MUST READ BOOK.
August 4, 2016
Its one of those educational and medical fact finding books about living with Dementia as told by the author herself. We the reader are allowed into her life and we can see how she feels when she realises her life is being taken away from her by slow Dementia. its a brilliant book on how she and her family cope, what medical help is out there . HIGHLY RECOMMENDED A MUST READ BOOK
May 18, 2016
Thank you, Kate Swaffer.
This is a book everyone needs to read. Through a straightforward narrative of her own experiences Swaffer brings to light some painful truths about the unique stigma and challenges of those living beyond dementia.
This is a book everyone needs to read. Through a straightforward narrative of her own experiences Swaffer brings to light some painful truths about the unique stigma and challenges of those living beyond dementia.
Displaying 1 - 8 of 8 reviews