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…
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…
Yes, just as it is usually non-Indigenous people who are responsible for racism, people without dementia, and even some people with dementia, are partly responsible for stigma, discrimination, the continuance of rights violations, and the systemic injustices and exclusion many are still experiencing. The dementia friendly initiatives have done nothing to improve things either, other…
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…
I’m forever hopeful of positive change… For so many things related to a dementia diagnosis, dementia care, disability support, respecful language, and ageing in general, as well as the many rights violations people with dementia continue to experience. This includes disbanding the harmful labels currently still being used to descibe people with dementia, or our…
In the world of mental illness, and of dementia, people are systematically locked up i.e. physically restrained, and chemically restrained. If you have dementia, even worse, you are segregated from all others, remembering of course, the only others this is done to without consent, are convicted criminals. Check out not only the video, but the…
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…
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…
Two webinars on deinstitutionalisation: “Ordinary lives” Todays post is to highlight two important webinars being hosted by the European Network on Independent Living, coming up soon. The United Nations Deinstitutionalisation Guidelines released in 2022 refer to all people with disabilties, which therefore includes people living with dementia. People with dementia are not only locked inside…
‘How can we redress and repair violence, abuse and neglect of people living with dementia in residential aged care?’ People living with dementia have been subject to significant harm, including violence, abuse, and neglect in aged care in Australia. Yet, this harm is rarely recognised and redressed. People living with dementia in aged care, as well as…
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…
I’m a member of the Australian OPCAT Network, and with permission, am posting a revised version of the contents of an email from the network here. As people with dementia living in residential aged care which they are locked in, and segregated, they too are living in places of detention, hence my interest in OPCAT.…
The University of Wollongong (UOW) has developed a program to ensure their community of students and staff are included, valued and respected. This is so much better than the dementia friendly initiatives, which has done so little to improve the respect and inclusion of people with dementia. Not have these initiatives reduced the stigma, discrimination,…
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