Anyone who has followed me here for a while will know that in 2008, following a diagnosis made by my neurologist of a young onset dementia, I was advised to prepare to die, via aged care respite, which I ultimately trademarked as, Prescribed Disengagement. I was not supported to live well, or positively at all,…
The Chief Executive Officer at Women’s Community Shelters, Annabelle Daniel OAM, wrote an interesting post on LinkedIn recently, which began with Albert Einstein’s quote: ‘The definition of insanity is doing the same thing over and over and expecting different results.’ With the greatest of respect and with very much love for the fierce and wonderful…
I’m unflinchingly determined to continue to expose what I believe to be human rights violations in particular against people living with dementia, of any age, and of our families. That someone else may not see something I beleive to be a violation, or that I am accused of being wrong, or of blaming people for…
By Dementia Justice researchers Linda Steele and Kate Swaffer Today, my blog is to share a newly published journal article I co-authored with my friend and colleague, Dr Linda Steele on the human rights case for reparations for people living in aged care, with a focus on people living with dementia: Reparations for Harms Experienced in…
Over the last fourteen years, I have moved from the loss of hope and the desperation caused by the Prescribed Disengagement® given to me by everyone except my neurologist after the diagnosis of a rare younger onset dementia. Disturbingly, I’m acutely aware this prescription of disengaging from our pre diagnosis lives is still being handed…
Life is most certainly an interesting ride and always one where perspective is helpful, which I have gained much more than I bargined for lately! For the last almost 14 years, I’ve increasingly felt like I’ve been at war. In contrast to what’s happening in the Ukraine, clearly I’m not. But I witnessed something today…
It has been many years since I trademarked my term, Prescribed Disengagement®, yet, there are still many people without dementia who continue with the 20th Century view and management of dementia. My medical specialist (a registered, experienced neurologist specialising in dementia and migraines) advised me after the initial diagnosis that there was “no treatment for…
It is a new year, so I am wishing you all a very happy, healthy and productive 2022. Oddly, I still feel like we just celebrated the New Millenium New Year… Anyway, I have not been active on my own website, for a host of reasons of which most are best left unsaid, but I…
It remains a high priority of mine, hence I have been campaigning for the deinstitutionalisation and de-segregation of people with any type of dementia of any age, and in fact, anyone of any age living in residential care for many years. This includes ‘memory units’ and ‘dementia villages’. Although two of the following Transforming Communities…
Whilst I was proud to receive a University of South Australia Alumni Award recently, I still always wonder why. The inceasing level of activism, and the voluntary work and research (sometimes even paid!) that I have been doing since being diagnosed with a rare young onset dementia 13 years ago, and since co-founding Dementia Allaince…
Thank you Brené Brown, for this timely reminder that it’s not just ok to stand up for what we believe in, to say the unsaid, it’s worth doing even if we are alone. It is sometimes lonely daring to bring light to stuff that’s been pushed into or kept in the shadows, especially when the…
It is September, which in the world of dementia advocacy, is referred to as World Alzheimer’s Month or Dementia Awareness Month (DAM), or even World Dementia Month. This name change has come about, to ensure inclusion of those who do not have a diagnosis of Alzheimer’s disease, but some other kind of dementia. It is…
By highlighting dementia as one of the many health conditions causing disabilities, I am joining the more than 1 billion people with disability campaigning for change! It is your chance to make history; to help make a lasting change for 1 billion persons with disabilities worldwide, and I invite you to join the #WeThe15 campaign.…
In a recent article I read on MamaMia about a young woman having to prove her disabilities, I was struck by the similarity to my experience, and that of many others, of having to prove we have dementia. “In just over the past month, Rhiannon has received two parking fines. The first of which she…
Whilst not specifically about Brain Health Awareness, I’m sharing a recent interview, which is 100% relevant to hope. I was delighted to be interviewed for the Aged Care Enrichment Podcast series, brought to us by SilVR Adventures and with their host Ash de Neef. It’s available wherever you get your podcasts from ⬇️ 𝗟𝗶𝘀𝘁𝗲𝗻, 𝗦𝘂𝗯𝘀𝗰𝗿𝗶𝗯𝗲 𝗮𝗻𝗱 𝗦𝗵𝗮𝗿𝗲 ⬇️…
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