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…
The blog post explores the Welsh concept of “Hiraeth,” representing a deep longing for home, often felt by individuals with dementia in institutional settings. It critiques how the healthcare system misinterprets their distress as clinical issues instead of a natural response to loss and displacement, emphasizing the need for compassionate care and community integration.
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…
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…
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…
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…
For some, reading my chapter in this book may feel like I’m ripping off a Band-Aid, or worse. It may feel like a betrayal. It may sound ‘angry’. There will definitely be moments of discomfort, denial, and even disbelief that a ‘retired’ dementia self-advocate could, and would dare to say many of the things I’ve…
On behalf of Linda and myself, I’m providing an update on our research project and provide links to our project resources, as well as a recording of the launch event. I was privileged to work as an Associate Investigator on this project with Dr Linda Steele. Our latest post, Launches, Publications, and Advocacy: A Busy Time…
‘Ellen Louise Pence (April 15, 1948 – January 6, 2012) was an American scholar and a social activist. She co-founded the Duluth Domestic Abuse Intervention Project, an inter-agency collaboration model used in all 50 states in the U.S. and over 17 countries. A leader in both the battered women’s movement and the emerging field of institutional ethnography, she was the recipient of numerous awards…
Long term care (LTC), is one term used to describe congregate living style settings including nursing homes and residential aged care institutions; most countries have their preferred term, as do academic journals. As a humanitarian and campaigner for civil rights and social justice, I’m becoming increasingly aware, and more educated on why these locked assisted…
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