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…
Written for and published first for The Aged Care Report Card and their news site RetireNCare on Apr 11, 2016, is my article below: We need dementia enabling. The time is now that the aged and dementia care sector not only provides us with better residential care, but the whole sector finds a new way…
Obviously, I am not blogging very often lately, mostly due to my brain being unable to focus on more than my new studies, and DAI matters. However, as requested, attached is an updated PDF version of the model of ‘care’ vs the pathways of disAbility support I advocate for, which people with dementia have a human right…
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…
As promised on Monday I am adding these two pathways again, in a different format, and in the hope they are able to be read. The first is the Medical model of ‘care’ currently still offered as the post diagnostic pathway to people with dementia, which simply supports Prescribed Disengagement® alongside the following is the Social/disAbility pathway…
The following are the two pathways of support published in my book, (Swaffer, K 2016, What the hell happened to my brain?: Living beyond dementia, Jessica Kingsley Publishers, p.p. 165-166) that many have recently asked me for. So, in case you simply wish to refer to them, I am adding them from a set of power point slides that…
No time to wait People with dementia Must no longer be willing To accept the disrespect The exclusion Or the passive stigma Still so evident in our educated society If a group of researchers Or any other group Who have been saying They respect us And that they include us Who are very happy to use us And…
No, I am not just over-tired or feeling a bit burnt out, but I am getting very annoyed at having to continually ask why, yet another group organising an event has published a list of speakers (yes, again), the topic of Consumer Directed Care, and yet, did not bother to invite a speaker with dementia, the very cohort…
My ability to blog every day has been thwarted lately for many reasons, none of which I have the capacity to write about at the moment! However, I want to invite you to attend the next Dementia Alliance International (DAI) “A Meeting of The Minds” Webinar on 23/24 March 2016. Our guest speaker is a supporter of…
You may have already completed the Alzheimer’s Australia National Consumer Survey – but if not, there is still time. Take the survey by clicking the following link: www.surveymonkey.com/r/consumers2016 Your views are important and Alzheimer’s Australia would like to invite as many people living with dementia and their carers to complete their National Consumer Survey. With an…
“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…
This is for all my friends living with dementia, who have good day, bad days, and downright shitty days. Otis Clay: “The only way is up”
In 2014 I wrote a blog called there is big money in dementia. I’ve just re read it, and also the many comments made by some of my wonderful blog readers. I am constantly reminded about this problem, and whilst we need a thriving industry to better support people with dementia and our families, it…
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…
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