Yesterday Ms. Ita Buttrose, the current Chair of the ABC in Australia, and an Ambassador and a past President of Dementia Australia gave a key note presentation at a Symposium hosted by DA. In the Q&A after her speech, she responded to one mildly defensive comment that there are ‘good aged care providers’, by saying…
CPRD / Daily Blog / Dementia / disAbility Rights / Discrimination / Living beyond dementia™ / Prescribed Disengagement ® / segregation / Stigma
Firstly, as we all face the current healthcare crisis, I acknowledge the challenging nature of these times and hope you are all safe and well. I suggest we phone our family and friends, and if that’s difficult, then consider writing a letter or sending a card. I love receiving letters and cards… I’m staying off…
Daily Blog / Dementia / Poetry
The loneliness of my grief is sometimes like my private torment, only visible to my heart and soul… I try desperately to hide my tears, to live inside my ‘denial bubble’, but every now and then the pain escapes. It is then that I realise that my eyes are filled with tears, and the indescribable sadness,…
In a blog comment this week about me handing things over to my BUB, I responded with this; ‘I have had to give up a couple of things this week, and hand the responsibility over to Pete.’ I felt physically SICK doing this, and incompetent, and guilty having to do so… even though I know he…
With the diagnosis of a terminal illness, mortality gets to sit at your table, right next to the knife and fork, up close and personal, whispering messages that you might die much sooner than you thought. You do not get to continue to view death from the large platform called life, but from the edge of…
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…
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,…
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…
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’,…
In chapter one of the book, Digital Convergence: Better Solutions for People with Dementia, edited by Nilmini Wickramasinghe, Thu Ha Dang, Tuan Anh Nguyen, and Sasan Adibi, I examine the dual nature of digital solutions for people living with dementia, highlighting both their potential to enhance independence and the risks they pose to human rights.…
Since my blog about the impact of watching DopeSick including my ‘mini’ existential crisis, I continue to learn about corruption and fraud in research and advocacy. The book by Charles Pillar, Doctored: Fraud, Arrogance, and Tragedy in the Quest to Cure Alzheimer’s says on the publishers website, “Piller uncovers evidence that hundreds of important Alzheimer’s…
Disability-Led Theatre Company Abundability Productions Returns to Adelaide Fringe If you are coming to the Adelaide for the Adelaide Fringe, I look forward to seeing you at the first night of the expanded season of OUTSIDE IN! Gold Coast–based disability-led theatre company Abundabiliteez Productions returns to the 2026 Adelaide Fringe with an expanded season of OUTSIDE IN at Nexus…
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…
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