Article 19 of the United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD), focuses on the provision (and right) that all disabled people have the right to live and participate in the community. This includes people living with any type of dementia, and easily justifies why it is no longer (and never…
Consumer engagement has been an overused catchphrase the last few years, especially in the medical conditions or diseases sector. Often, receiving grants now depend on an organisation or researcher engaging with us. There is also a significant amount of intellectual property to be gleaned (for free, and often not acknowledged) from consumers, and high profile consumer engagement can…
This article was exactly what I needed to read a few weeks ago, especially after feeling such angst, despair and frustration about people without dementia, continuing to exclude the group I represent. The phrase, Nothing about us, without us (apart from helping to get funding applications approved – where we are more often still…
“Planning Ahead is about taking control of your future. It is about putting things in place. It means that your choices will be known and acted on if you cannot express them yourself at some time in the future. This may happen if you have a sudden accident, become very ill or develop a condition that…
It is normal for some relationships to deteriorate into power struggles over who is right and who is wrong, but it does not seem so okay when it is power struggles and egos of people without dementia who don’t appear to want people with dementia to stand on their own two feet. In my thinking…
finding our way wanting the same our differences visible or invisible not to be seen as disabilities but as Abilities we are still the same even though we may look different or act differently to you our hearts are in tact we still have desires and a need to be independent to learn from each…
I‘ve been advocating for people with dementia to be included at every single conversation about them for many years now. For the last year or so, have also been actively asking people without dementia, to take action as well. For example, I have been asking that when they get invited to be key-note speakers, or receive invitations…
As co-chair of the Alzheimer’s Australia Consumer’s Dementia Research network, I presented at an Annual Meeting of the Cognitive Decline Partnership Centre (CDPC) this week on why it is important to include consumers in research, in particular people with dementia, as to date, most of the research has been done with care partners or the families…
The road of advocacy and self advocacy is a really tough one, especially as most often, to have become an advocate, you must have become part of a marginalised group that is being discriminated against, or speaking out on behalf of someone who is being treated badly. This means, of course, you often make quite…
As a person living with a diagnosis of younger onset dementia, the voice of people with dementia is a particularly ‘hot topic’ for me. I have lived well with dementia so far, and although deteriorating slowly, continue to live well, with many and varied disability supports in place. When I first started attending events including conferences…
There are a couple of links below for which I ask for your support. The first is a survey aiming to support a more inclusive voice of people with dementia at ADI2015, being held in Perth Western Australia. The phrase ‘nothing about us without us’ is still bantered globally, and until now the voices of people with…
Yesterday I attended a Policy forum at Health Consumers Alliance (SA) to have a voice as a consumer about policy wishes for the next election in South Australia. It was an interesting meeting, with excellent input from the organisation and other consumers. Mental health, the homeless, and aged and dementia care were well represented, as…
I’m often challenged by the fact that conferences, seminars, forums or educational programs about dementia, often marketed to people with dementia (PWD), and as events which are inclusive of them, are organised exclusively by people without dementia, and for the most part, without people with dementia as plenary speakers. Many of you know I have regularly railed against…
My website and Daily Digest or blog has grown legs, and is now being referred to as a resource for a variety of dementia training organisations or other sites. It is exciting and empowering, and also gratifying it is seen as useful, but with this comes a certain amount of pressure to ‘perform’! Some time…
Richard Taylor gently reminded me yesterday of the Abraham Lincoln quote, about only pleasing some of the people some of the time. Thank you. I feel vaguely fragile after another week of taking deeply personal risks by speaking out honestly and receiving more rebukes or disagreement with the way I feel about things. My dear…
