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’,…
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.…
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…
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…
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…
Introduction to Dementia Rehabilitation: This free course aims to raise awareness, change attitudes, and present evidence for the need and provision of rehabilitation as part of post diagnostic care for all people with dementia and their care partners. It is suitable for a mixed audience, including health care professionals, peopel living with dementia, care partners…
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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