Books

What the hell happened to my Brain?: living beyond dementia

Drawing on my lived experiences, I explored the daily challenges faced by those diagnosed with dementia. By challenging the notion of Prescribed Disengagement®™, I hope to offer a fresh perspective on how to live beyond dementia rather than only die from it, and how family, friends and dementia care professionals can more positively support people post diagnosis to do this.

Love them, or hate them please feel free to write a review here or on Amazon. My only request if you do, is please do not refer to me or other people with dementia as sufferers, even though we may and do suffer some of the time.

The Forewords for my first book were written by the late Dr Richard Taylor, Dr Shibley Rahman, and Mr Glenn Rees AM, Chair of Alzheimer’s Disease International.  I was deeply moved and honoured Richard recorded this, and have added it below.

Diagnosed with Alzheimer’s or another dementia

This book was co-authord with Associate Professor Lee-Fay Low from Sydney, and our dream for this book it is a ‘one stop shop’ for families and individuals facing a diagnosis of dementia.

We were deeply honoured Professor Henry Brodarty wrote this Foreword for our book;

“Dementia is never one person’s illness. Its ripples spread wide enveloping family, touching friends and bumping up against professional services and care. Dementia can be cruel – hard for those affected and sometimes even harder for care partners. When Alzheimer’s and other dementia came out of the cupboard in the late 1970s, lots of advice was provided for carers or caregivers (as care partners are commonly called) with support groups internationally focussing on them. In the last decade the voice of people with dementia is now being heard more clearly. In the past, the emphasis was on the negative which of course exists. Now we are hearing about how to live with the positive.

This book is unique! It stands out from the thousands of books that have been published on dementia. It is told from the viewpoint of a person who has been living successfully with dementia and a researcher interested in living well in later life and with dementia.

When Kate Swaffer was diagnosed with dementia before her 50th birthday she rejected the prevailing dogma of Prescribed Disengagement TM. She prescribed her own formula of engagement which includes writing – this book is just one of her contributions, studying for her PhD and advocating. And when Kate is not travelling to Geneva to talk to the United Nations or to a conference, she is a wife and a person who wants to enjoy life. In living with dementia, Kate has developed strategies on how to cope with her disAbility. We can all benefit by learning from her.

Associate Professor Lee-Fay Low has a wealth of experience working first as a nursing assistant in residential care, as a clinical psychologist and as an academic researching dementia. Lee-Fay is creative and empathic. She is on a mission to put fun back into life for seniors and especially for people with dementia. It was Lee-Fay who led the SMILE study which demonstrated that humour therapy could reduce agitation and improve depression and quality of life for residents of nursing homes who had dementia and were rated as behaviourally disturbed. It was Lee-Fay who spearheaded a dance intervention in nursing homes. It was Lee-Fay who conceived and evaluated a program for community workers to positively engage older people receiving community care.

With such a dynamic duo of authors you can expect a book that is constructive and upbeat. But it’s not Pollyanna! It’s realistic and tells it as it is. The difference with this book is that Kate and Lee-Fay offer strategies and solutions. Their account is practical. It takes the reader step by step through the basics and then outlines different issues from diagnosis to legal issues to incontinence. You, the reader will learn about the differences between dementia, Alzheimer’s, Lewy body disease and frontal lobe dementia. You may have had questions about the different drugs for Alzheimer’s and the latest “miracle cures” that regularly appear in media. Does coconut oil work? What are the scams? Does exercise help? Does computer cognitive training work beyond the computer? What is the best diet? When should I arrange Enduring Power of Attorney? How is Power of Attorney different to Guardianship? Are pets good for you?

Dementia requires a partnership over the long haul between persons living with dementia and their care partner, family and friends, doctors, nurses, community services, residential care and sometimes palliative care. Swaffer and Lee describe what services are available. Currently services are set up to be reactive, only coming into play in response to problems or crises. I have long advocated for a system of key workers, who would guide the person with dementia and care partner through the complex often bewildering maze of services. Unfortunately we do not have such a system; yet this book is a personal guide on how to face the challenges that the ever-changing face of dementia presents over time.

I particularly liked the chapter on Living with Dementia. Communication is so important to how couples relate generally; in dementia it’s critical. There is a table in which Kate and Lee-Fay describe a care partner’s communications and actions and the reactions of the spouse with dementia and how these could have been handled better. Here is an example:

Care Partner: I had to tell a couple of shop workers when she wasn’t looking in case she annoyed them

Person with dementia: Are you telling people about me? I didn’t know that. I don’t like the idea of that. You should ask me first. I don’t care if you thought it best.

Care Partner (on reflection): Next time I will ask her permission before telling people about her dementia.

Person with dementia: Remember the phrase, “Nothing about me, without me.”

The book does not shy away from the sensitive issues that so often are avoided – all focusing on the viewpoint of the person with dementia. You and your care partner will be interested to read about the right to sexual desire and relationships, how a person with dementia and the person’s care partner handle transition from driving, how to compensate for declining competency when still working, how to handle holidays, how to manage Christmas and family celebrations. And what if you become irritated with your care partner and your care partner becoming irritated with you?

Kate and Lee-Fay beautifully describe dilemmas that arise. Over protective care partners who only want safety for their loved one with dementia but for themselves would prefer autonomy. How should a care partner (and residential care staff) react when a loved one with dementia starts to enjoy an intimate relationship with another resident in the nursing home? And how should a person with dementia (and friends) react, when a care partner starts an intimate relationship with another while his or her spouse is in care?

This book is an affirmation that dementia is a word not a sentence. A diagnosis is the beginning of a new phase, one that most of us fear, but one that can be met and challenged. There is so much that we – people with dementia, family care partners, friends, or aged care and health workers – can all do to maximise a positive life for many years.” (Henry Brodarty)

Learning life from illness stories can be ordered from the University of South Australia: learning-life-from-illness-stories-order-form. Edited by Peter Willis and Kate Leeson, Post Pressed, Mt Gravatt, Qld, 2012 177 pages, AUD $29.95 ISBN 978-0-646-57932-0

Foreword by the late Dr Richard Taylor for What the hell happened to my brain?: Living beyond dementia

The books are also being stocked in local book stores such as Dymocks and Angus and Robertson, and if you ask, your local bookshop or library will get it in for you.  

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I was delighted to receive this review, from Michelle Harris | Dementia Consultant, Community & Residential Services, Bethanie, WA

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13 thoughts on “Books

  1. Pingback: A win for all people with dementia |

  2. Hi Kate, How can I get hold of a copy of your recent book “Diagnosed with Alzheimers or another Dementia”, seems to be out of stock everywhere??

  3. Wow! Ok, my journey with you Kate started today.

    I’ve just read some of your latest posts and ordered your book.

    I then listened to Richard Taylor’s video review above, and it completely resonated with me -thank you Richard!

    Now, I’m about to start the much anticipated MOOC Understanding Dementia course with the University of Tasmania to support my personal and professional experiences with dementia. As a nurse working in the aged care sector, I find the Australian in-house dementia care slower to innovate when compared to global progress, so I’ve taken some time away from nursing and launched myself into self-directed research and get a better understanding of this vast industry that is caring for the elderly, and of course, this includes the all too common dementia care.

    So here I am, learning about dementia outside of a facility.

    I can’t wait to read your book and contact with you as I move through the MOOC course.

    All the very best Kate, and thanks again,

    Kirsty Porter
    Founder
    http://www.theageofsenescence.com

  4. Pingback: Dementia Awareness Week UK | Creating life with words: Inspiration, love and truth

  5. Pingback: DAI Media Release - Dementia Alliance International

  6. Another fabulous review about my book – https://www.amazon.co.uk/What-hell-happened-my-brain/dp/1849056080 – which is also on my Home page…

    “What the hell happened to my brain?: Living beyond dementia”, by Kate Swaffer

    Jessica Kingsley 2016
    ISBN 9781849056083

    What The Hell Happened To My Brain? is the story about the impact on the life of a very busy woman of an “uninvited visitor”, an “unwelcome 50th birthday present” – dementia.

    The author, leading international advocate Kate Swaffer, describes her experiences. She offers her story and reflections to powerfully argue for a life beyond dementia, beyond the diagnosis of dementia, to show people “who I really am”.

    The author speaks of stolen dreams, of being cheated, of dementia as a pseudo death, of drowning under the weight of guilt and loss and of hallucinations where strangers and wild cats occasionally stalk her. Her ‘high functioning brain’ has slipped away, sometimes showing itself like a ghost. She describes her soul has being sucked out little by little and watching herself die. There are tears, lots of tears, and ‘hiraeth’, the bond for home – ”who I once was”. She misses her memory, which has become a desperately bare landscape.

    This very personal story is combined with a comprehensive reflection on the issues concerning the impact of dementia on people’s lives and of the lives of those around them: from “why me, why this, why now?” through illness, sadness and positivity, the burden of disbelief, younger onset dementia, grief, loss and guilt, myths, loneliness and stigma to family care partners, interventions, advocacy and more.

    The author rails against what she describes as Prescribed Disengagement®, where people are told to go home and give up, to get their end of life affairs in order and give up work and study to ‘live’ for the time they have left. This, she argues, leads to fear and removes any sense of hope for the future. On the contrary most people with dementia live in the community with support and participate in activities they did before diagnosis. Reclaiming a pre-diagnosis life and ignoring Prescribed Disengagement is to “reinvest in life”.

    This includes regarding dementia as a disability, with better advice and services that enhance quality of life, well being, support ‘fighting for our lives’ and provide positive meaningful engagement that breaks with traditions steeped in bias, stigma and the discrimination “that isolates us”. Including dementia as a disability would mean that “many more of us would simply get on with our lives, accommodating our particular disabilities for as long as possible”.

    Explanatory lists that effectively illustrate the author’s points include the impact of younger onset dementia, the impact of delayed diagnosis, the myths and responses to them, positive response to Prescribed Disengagement, response strategies through assistive technology for disabilities caused by cognitive impairment and steps to becoming dementia friendly accessible communities.

    The author speaks warmly of her family, of the impact of her dementia on her teenage boys and her ‘her husband, who she calls her ‘Back-Up Brain’, and their corresponding support. A Back-Up Brain empowers the carer to be with or alongside the person with dementia rather than to care for them; a subtle but significant difference.

    Professionals talking about managing behavioural and psychological symptoms of dementia (BPSD) drive the author to ‘ranting distraction’. Are we to manage behaviour or improve staff education about dementia and client communication needs, she asks?

    In discussing interventions, the author outlines her own experiences as a blogger. For her, life stories and poetry based around the narrative of one’s life, are not only valuable “for us now” but has the potential to provide a detailed life history. It allows explanations of support that promote not only humanity and self evaluation but intimate sharing. Blogging has helped the author overcome many of her fears, capturing memories and a personal history file, “I forget, blog and it is always there”.

    Central to the author’s advocacy is the engagement of people with dementia who, she argues, are being left out of many of the conversations and events about them. Indeed, advocacy itself is an intervention about “owning your own life and helping someone else reclaim theirs”.

    Importantly for someone who has been given the Prescribed Disengagement® lecture, it is a reason to get up, a source of fulfilment.

    In closing, the author offers her own extensive activities as proof that people can live beyond the diagnosis of dementia.

    There is, of course, much more. This book is a record that needs to be read by anyone working with or associated with people with dementia and those around them.

    Phil Saunders
    Strategic Policy Engagement Consultant
    William, Robert and Grace

    Thank you Phil.

  7. Hello Kate
    Your blog is refreshingly positive. I am an arts facilitator and have just got my PhD. I work in day care centres with older people, the majority of which have dementia. I work very hard at finding activities that challenge and engage older people that brings them and their famlies joy and raises their self esteem. I am always interested in positive perspectives regarding dementia. Some of my work can be viewed at info@rnni.org. Good luck with your inspiring blog. I look forward to reading your book Geraldine

  8. Kate Swaffer’s new book is the must-read, go-to reference for dealing with all kinds of dementia – from Alzheimer’s, Leukodystrophy, MS, aging, or any neurological disorder.

    This is the book you’d wished for, when you or a loved one was first diagnosed. It’s what we all need to finally help us articulate or understand how it feels to slowly lose what we’ve always taken for granted: the ability to multi-task, recall words, make decisions, manage money, organize our lives. A former nurse, Kate had seen this many times. Then eight years ago, at age 49, she, too, was diagnosed.

    So Kate has made this book more than you or I could have ever imagined – she not only opens her [still-remarkable] mind to offer her vast knowledge and caring spirit, she also provides over thirty chapters with practical answers to your questions on living – and I mean really living well and beyond – dementia. Keep a pencil or highlighter handy; you’ll want to take notes and share these words!

    Kate Swaffer is living proof of the hope we can still have for a good life even when our cognitive skills change. You can meet her and many others living with dementia online through the wonderful “Dementia Alliance International (DAI), an organization she co-founded for Support and Advocacy of, by, and for People With Dementia. (Only people with dementia may join, and membership is FREE.)

    If you have dementia, you’re not alone. There are over 47 million people on Earth with dementia. And there’s no shame in it. Read Kate’s book, go online to DAI, or attend a dementia conference, and you’ll meet some of the still-active people who’ve been living with dementia for 10-20 years. Doing that has helped me discover new ways to enjoy my own life again, eleven years after my first diagnosis.

    Yes, I, too, have dementia, and I’m still living a good life.
    (For more information: dementiaallianceinternational.org/)

    – Mary L. Radnofsky, Ph.D.

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