We definitely need to turn the table on who needs to be accommodated, and enabled to live in our society. Thus far, people with disabilities continue to be systemically marginalised, and accomodations that support us to live independently are more often determined by people withOUT disabilities. Yes, this is despite the motto, ‘Nothing about us,…
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’,…
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…
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…
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…
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 sharing some exciting news about the next chapter in the life of the Dignity Manifesto of Design for People Living with Dementia. Since its inception, the Manifesto has sought to set out clear values and design principles that uphold the dignity, autonomy, and wellbeing of people living with dementia. It grew from the foundations…
Image source: https://www.monash.edu/medicine/national-centre-for-healthy-ageing/living-labs/Improving-access-to-rehabilitation-for-people-with-dementia The right to rehabilitation of everyone, including people with dementia is one of my pet topics, and anyone who’s followed me here for a while will know I’ve been writing about and campaigning for dementia to be supported as a condition causing disabilities, and for proactive rehabilitation immediately after diagnosis for all…
Dementia is not in itself a disability, but reframing the symptoms of dementia as disabilities aligns directly with a rights-based approach under the Convention on the Rights of Persons with Disabilities (CRPD), rather than just treating them as biomedical “deficits”. This graphic provides a visual example of some of the disabilities people acquire as a result of…
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…
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