It is time to write the second Edition of this book, which will be an Audiobook, especially as this first edition needs an update. I’m looking forward to being able to launch the audiobook, but especially to updating a few of the chapters in my first book, as not only have my opinions changed since 2016, advocacy and research requires some honest appraisal.

The chapters on Dementia as a Disability (chapter 17), Stigma (chapter 18), and especially Dementia [un]Friendly Initiatives (DFIs) (chapter 32) and the so called ‘Challenging Behaviours’ (chapter 26, otherwise referred to as BPSD) will be revised. This is needed as so little has improved, or, has gotten worse. That people with dementia are still Prescribed Disengagement (chapter 16) is truly appalling, and the negative impact of the DFI’s requires unpacking.

The late Dr Richard Taylor, Co-founder, Dementia Alliance International wrote this foreward:

“Most folks I have met who are living with the symptoms of dementia (and I have spoken to and listened to hundreds and hundreds of them) begin their journey living with the symptoms of dementia following in the footsteps of the millions who have already heard the words “you have dementia, probably of this or that type.” We focus on the very end stages of dementia. We tell ourselves, we act as if we have lost control of our lives, dreams, relationships. We begin to wait for the day our suffering ends and we will die, confused and alone.  Personally, I cried for two weeks after I heard these words. Personally, I had no idea why I was crying. The stigmas of dementia incubate between the ears of most everyone walking the earth. 

Kate Swaffer was no different from any one of us. What sets her apart, what makes it important that as many people as possible read this book is her amazing insights to what, why, and how most of us are overwhelmed, frightened, confused, and afraid of our fate, once we have hear the diagnosis.

She brings a genuineness, an openness, an ethos which is comforting, informing, and deeply both positive and reassuring that we are okay. Our humanity is still and will always be intact. We all, still, and each have a future filled with opportunities for living a full and meaningful life. She not only practices what her book preaches, she live it. 

Kate brings a palpable sense of urgency to understanding and accepting those of us living with dementia and to the rest of her readers. It is an urgency that says stand up and speak out. Embrace your life. Do not become a victim of circumstances. To others (carers, professionals, friends and family) she asks, sometimes demands they accept us as whole people.

If you want to know of a contemporary profile in courage, if you want to know dementia from the inside out – read this book.”

Below I highlight the reviews which appear on the publishers website, which I had either not seen, or cannot recall reading.

Steven R. Sabat, Ph.D., Professor of Psychology, Georgetown University, Washington D.C., U.S.A.

“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.”

John Killick

“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.”

Janet Baylis, Alzheimer Society Book Group

“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.”

Laura Venables, 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!'”