The discourse of suffering has long been a topic of lived/living experience dementia advocates and activists. Most people who’ve followed me here will know I have been very vocal about it, and how it is harmful to people living with a dementia diagnosis at any age. I presented on the topic on the power of…
Over the years since my own diagnosis, I have talked and written about the profound and complicated loss and grief which I continue to experience following the diagnosis of dementia. To be honest, the phrase, “I didn’t get to say goodbye”, is just as applicable to losing some part of my functioning, capacity, including being…
Here are the links to three podcasts hosted by ‘With All Due Respect‘ I was interviewed for last year, which I probably forgot to share here. My beliefs about the dementia-friendly iniatives is that they are unfriendly to people with dementia, and wporse, are a waste of time and money; money that should be used…
When people are still being medicated for understandable reactions to a terminal diagnosis of any type of dementia, for responses primarily due to the lack of post diagnostic care, the grief and trauma of the diagnosis, the ongoing neglect, complex and constant grief, over, or under-stimulation, being incarcerated and segregated in a ‘secure dementia unit’,…
Following on from my recent short blog about the book and mini-series, Dopesick, I am writing about having an existential crisis… For many years, and with each new year now, I’ve had an increasing feeling of pessimism about the lack of change from my activism, or the advocacy and activism of so many others, especially…
Synopsis from Wikipedia: “Dopesick focuses on “the epicenter of America’s struggle with opioid addiction” across the U.S. on how individuals and families are affected by it, on the alleged conflicts of interest involving Purdue Pharma and various government agencies such as the Food and Drug Administration and the United States Department of Justice, and finally, on the legal case against Purdue Pharma and…
Author: Kate Swaffer © 2026 Despite decades of research, and public awareness efforts — including the widespread proliferation of the non-inclusive dementia-friendly campaigns— people diagnosed with a dementia continue to experience pervasive issues including stigma, structural discrimination, and social exclusion. These outcomes persist not because of a lack of awareness per se. They persist primarily because…
Following the free Dementia Rehabilitiation e-Course I was involved ih developing, now being hosted by Dementia Training Australia, it is great to share another step towards supporting people with dementia to remain active and engaged in their (our) communities. It is even more important to people with dementia and their care partners and families who…
Dementia is of course, a topic that is quite rightly covered during the World Health Assembly (WHA). Members and staff of some of the dementia charities such as Alzheimer’s Disese International (ADI) attend, host side events and so on. I’ve attended a few of them, including the 2017 WHA when the Global Action Plan on…
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…
It’s great to see new dementia advocates inspired and empowered to start speaking up for change. What’s disturbing though, is that after more than four decades of it, ‘we’ are asking for exactly the same things as the pioneer dementia advocates including Christine Bryden and James McKillop (who were both diagnosed in the last century),…
My inner rage, sometimes quiet, sometimes more obvious and loud – against the persistent status quo, particularly in the field of dementia ‘care’ is not meant to be personal, not to any individual, or to any organisation. I am well aware and often say in presentations that almost everyone I know goes to work (paid…
Taking the Pedal Off the Metal: When Should Older Adults Stop Driving? Published by NIH News in Health, October 2021 “… some health conditions common with aging may make it riskier to get behind the wheel. Stiffer joints and weaker muscles can make it harder to steer or brake safely. Eye diseases and some medications…
For almost 15 years, I’ve been campaigning for ALL people with dementia to be advised the symptoms of dementia are acquired disabilities, not only a death sentence, and for all people with dementia to receive rehabilitation, immediately after diagnosis. This is to support, and even improve cognitve and functional abilities, as well as improve our…
A colleague and friend Tina Minkowitz* works towards the rights of survivors of psychiatric abuse, and runs a course for activists and allies on the Convention on the Rights of Persons with Disabilities from a Survivor of Psychiatry Perspective. Her article on disability and incarceration is worth a read, even if you don’t have time…
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