Living Beyond Dementia

Released 21 January 2016

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.

7 thoughts on “Living Beyond Dementia

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  3. Good morning,
    I work in the dementia field and have been interested in your stance on how people who have dementia are treated. You say you do not now support the dementia friendly initiative. Please can you give a few reasons for this as this is the foundation for many organisations working with dementia.

    Also, do you think your stance is specifically more for persons who developed dementia at a younger age or is it for everyone whatever age they develop dementia?

    Finally what would you replace the dementia friendly initiative with? How should organisation work with and for people who have dementia?


    • Hello Winsome, I’m not sure I can answer this in a brief comment, but when I feel brave enough, will start by publishing a blog on what is ‘unfriendly’ about dementia-friendly. It deserves a whole book too. A search on my website on this topic may also provide you with more information. Thanks for asking.

      Liked by 1 person

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