In 2016, I was interviewed by Jessica Kingsley Publishers JKP), soon after the release of my book, What the hell happened to my brain?: Living Beyond Dementia.
This is my response to one of the questions:
Q: What would be your best piece of advice for others who are living with dementia?
A: My advice is to IGNORE the Prescribed Disengagement® you will be given, and reclaim your pre diagnosis life; demand support to continue to live YOUR life independently for as long as possible, with strategies and support for the disabilities that the symptoms of dementia cause.
It is a human right to be supported to live, not only to die.
Universities automatically support students with disabilities – so why doesn’t the health sector. Dementia is the only disease I know where we are simply told to get our end of life affairs in order, but with no support for it being a terminal illness, then told to get acquainted with aged care, and go home and give up. This is not only unpalatable, it is unethical…
The full interview with JKP is available to read here…
Footnote: In 2019, I asked my publisher if I could write a 2nd Edition to this book, in particular as there are 3 chapters that need significant revising.
For example, chapter 32 would be radically different as I no longer support the dementia friendly initiatives (and had not for years, but got sucked into agreeing with them in 2013!).
Anyway, that’s a whole other book I hope one day to finish writing!
Below is a video foreword for the book, by the late Dr Richard Taylor. I’m extremely honoured he provided a written and video foreword for my book, and still miss this dear friend.