In 2016, I was interviewed by Jessica Kingsley Publishers JKP), soon after the lease of my book, What the hell happened to my brain?: Living Beyond Dementia. This is my response to one of the questions: Q: What would be your best piece of advice for others who are living with dementia? A: My advice…
As the time to provide a submission to the Royal Commission into Aged Care Quality and Safety draws to a close, I remain deeply concerned nothing will change, in spite of the more than 8000 submissions, millions of dollars spent on the Royal Commission, and any likely outcomes or ‘recommendatons’. Historically, the Australian government chooses to…
Ending confinement and segregation: barriers to realising human rights in the everyday lives of people living with dementia in residential aged care. This article was published on 25 Jun 2020, in the Australian Journal of Human Rights, by Linda Steele , Kate Swaffer , Ray Carr, Lyn Phillipson & Richard Fleming. Abstract: Human rights are increasingly being considered in Australian law reform…
Personally, I dislike being labelled by anything, including, or especially by a disease. Being labelled to my height, my skin colour, etc. is also offensive, and I simply prefer to be referred to by my name (the one I chose). Negative language and labels have the power to disempower us, as I spoke and…
Before the COVID-19 pandemic, most of the world looked the other way when faced with the reality that even the most basic of human rights were being denied to people with dementia, including at the time of their diagnosis and for the rest of their life thereafter. What this pandemic has done, is to highlight…
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…
In 2015, Dr Al Power, Daniella Greenwood and I were accused by a young academic of being deeply offensive, and wrong. This was after we had all given keynote presentations at a conference challenging the status quo in dementia care, and in particualr challenging the concept of BPSD. We believed then, and I’m confident I…
Try as I might, I am currently really struggling to convince a group of global researchers on the importance of adding two simple things to a list of possible interventions following a diagnosis of dementia. It has got to the point, I feel discriminated and stigmatised by them, as most in the group generally seem…
The quest for a more positive public narrative about those of us diagnosed with dementia, and on attitudes about the way a person and their family might choose (and be able) to live with dementia continues. Currently, living too positively with dementia, being remotely functional, and even having fun with it too often gets those…
The short Vimeo I am posting below today was made by a friend and colleague in Scotland, which I found to be incredibly profound. For me, it spoke mostly about truth. But it also speaks about lies and deception, and arrogance and the lack of scrutiny. As I have become what others often tell me…
Hello. It has been about a week since I last posted a blog, and I decided to start the new year with one which was posted on the International Day of persons with Disabilities on December 3, 2018, on why employers should employ people with disabilities. So, I’m beginning the year here with a mataphorical…
In the last few weeks, there have been a few articles, blogs or tweets on the impact of others publicly doubting a persons diagnosis of dementia, which I am highlighting here for your weekend reading! One tweet by a professional last week claimed with certainty some people don’t have dementia. Whilst it didn’t name anyone,…
Following on from yesterdays blog, I am today highlighting a very important and relevant Dementia Alliance International (DAI Webinar that is on later this week. Our presenter is Associate Professor Lee-Fay Low from Sydney University, presenting Rehabilitation for dementia: Evidence & Opportunities. It is one event, set in different time zones. See below for the times and register…
Last week, I presented at an online Webinar for brainXchange, with friend and colleague, Monica Cations. I’m not so great lately at promoting events or activities here, or even writing blogs, so thought I’d make up for it today! The session was called Rehabilitation as the future of dementia care. My presentation, Dementia as a Cognitive…
The life of an advocate can definitely be rewarding, but it can also be very challenging. Along my own roller coaster ride of living with dementia and public advocacy, I have met a lot of wonderful people, as well as felt a lot of frustration. I am though, very happy not to be walking alone…
