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…
