I’m delighted to share the following video by a dear friend and collegue of mine Mary Beth Wighton, produced in collaboration with Jessica Luh Kim. MB’s words resonate with the work done by so many of us over many decades towards realising the human rights of all people with dementia. My sincere thanks to them…
A colleague and friend of mine wrote this about the drug, lecanemab (Leqembi), a drug I have not been supportive of either. I’m tired of pharmaceutical companies and many members of the medical community focusing on drugs and a potential cure, instead of care. Risk reduction has rightly become a major focus, which of course…
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…
Following on from my recent blog about hiraeth and dementia, it has been interesting considering the impact of the longing for home and how is impacts people with dementia who are restrained in segragated, institutional settings. My own feelings about this deep – and mostly unacknowledged yearning, is that people with dementia very likely experience…
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’,…
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…
As a person living with a diagnosis of a rare young onset dementia and a retired (?!) activist engaged repeatedly in research, policy, and advocacy spaces, I argue that research which fails to achieve its stated aims is not simply ineffective—it constitutes a breach of disability rights as articulated in the United Nations Convention on…
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…
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…
I’m pleased to share that the Dementia Justice website, which had to be closed down in October, is now being hosted with its own page on my personal website. This research project is the one of two which I am currently the most proud to have been involved in, as well as working alongside Professor…
Over the years, I’ve been a vocal campaigner to ban the paradigm known as the Behavioural and Psyhcological Symptoms of Dementia (BPSD). This harmful labelling of normal human responses to a diagnosis of dementia, or to poor care, harm and neglect, was developed with funding from J&J who has had many legal challenges over misleading…
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