The summary below and a link to the full article titled “What Happens in the Brain When We Imagine the future” highlights to me, the impact of lost hope, after being Prescribed Disengagement when first diagnosed with dementia. Many years ago, I trademarked that term, after advice it would be plagiarised if I didn’t! Sadly,…
The 15th Conference of State Parties to the Convention on the Rights of Persons with Disabilities (COSP CRPD) was held in New York at UN headquarters on 14th-16th June. My blog today highlights an excellent COSP15 Side Event on Remedy and Reparation for Institutionalization, moderated by colleague and friend Tina Minkowitz, who is President of…
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…
This report is the 2022 Assistive Technology Report released by the WHO and UNICEF. CBM International also contibuted to this report. Some major points highlighted by the WHO include: Almost one billion children and adults with disabilities and older persons in need of assistive technology are denied access. Let’s not forget this figure includes more…
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…
In 2022, women are still worse off than men, so for #IWD2022 I am sharing a personal blog, as well as two important events. Scroll below for the details of the two events: 1) deinstitutionalization, and 2) ageing with rights. Apart from the reality that dementia affects more women and girls than men and boys,…
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…
Please consider registering to attend this important event; even if the time does not work for you, once registered, you will then receive the link to the recording afterwards. You are also invited to share it amongst your professional and other networks. As you know if you follow me here, my focus is on improving…
The Global Disability Summit 2022 is on soon, and includes many side events, and I’m sure people on my side of the world will be interested in this one, especially people with dementia who live with multiple disabilities and are currently most often being denied their rights and access to the CRPD. It really is…
Ok, so it seems I am focusing too much on what is difficult, or painful, or that I really really really dislike! On the weekend, it was the progessive annoying cognitive disabilities due entirely to dementia that caused me to feel bereft and angry. Last night, and today, I’ve decided I hate osteo arthritis… Which…
My dear late aunt who I miss every minute of every day taught me not to hate anything, but I have taken that to mean people today, not ‘cognitive capacity’ because… I hate not being able to spell any more (I used to get 99.5-100% in spelling tests) I hate not understanding words, and every…
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…
Words have great the potential to hurt, and hurtful words can also leave long lasting scars. As anyone who has followed me here for a few years, you will know I have written and spoken about it many times. I’ve even been plagiarised by a dementia consultant based in the UK, so some of what…
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…
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