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…
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.
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…
For many years, I have campaigned against the use of the harmful label, BPSD (Behavioural and Psycholoical Symptoms of Dementia), as believe strongly it was/is labelling normal human responses to issues such as a difficult diagnosis, and the multiple, ongoing violations of rights experienced by people with dementia once diagnosed,including death, as well as more…
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…
For those who are new to my website or long time readers, todays blog is about a survey which is part of the ADEPT study. It emerged from a group of people keen to improve environmental design to ensure accessibility for ALL people with dementia. Many are members of the Dementia Alliance International Environmental Design Special…
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…
Recently, I started to become interested in the work of a psychologist, Dr Roger McFillin, and after listening to multiple Radically Genuine podcasts and interviews and reading his posts on social media, decided to join the Conscious Clinician Collective. This initiative is open to everyone, not only clinicians. That is, anyone with an interest in…
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…
My usual effervescence and optimism disappeared momentarily when I learned last week that the Australian Therapeutic Goods Administration (TGA) has approved the use of donanemab in Australia. Evidence is weak for benefits, but high for serious side effects, some even causing death. It is only for people in the early stages of Alzheimer’s disease. And…
When I was 14 years of age, it became acutely clear to me that “if it was to be, it was up to me”. What happened that day in 1971 taught me categorically that to survive, I would have to become more resilient, and completely self sufficient. It was a powerful experience that determined without…
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…
Chapter Review by Elizabeth Deane McCarthy, Student of Ageing and Public Policy, 2024 “Coming from a background of Mental Health Nursing (Training completed during the COVID pandemic) with a special interest in Dementia, I picked up Ageing of the Oppressed and couldn’t put it down. Kate Swaffer’s chapter ‘About Us Without All Of Us: The…
Over the last few years, but especially the last few months, I feel like I have finally found my tribe, or perhaps, I have found a new tribe. This emerging and growing group of people I have come to know, either through social media, zoom and even a few who I’ve met in person, not…
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