One of the problems with the advocacy organisations, and the many other organisations who have people with dementia in their mission statements, and who state they advocate ‘for’ us, and many who also say they are ‘fueled’ by the loss of a mother or father or some other person they loved ‘to dementia’, is that they may say…
A friend of mine in the UK, Ken Clasper has written this important blog Getting the correct Diagnosis first time. As he says, getting the correct diagnosis, of anything, is imperative and having been misdiagnosed a number of times with serious conditions, or not diagnosed for 45 years, for a serious brain malformation, I get…
Over the last few months, perhaps years, I’ve noticed an increasingly offended, and even occasionally, an increasingly outraged voice from care partners of people with dementia, objecting to the louder global voice and inclusion of people with dementia. We are quite rightly, adding to the public discourse on dementia. There has, for a number of years now, been…
Change is almost always difficult for people, and the wave of change via the voices of people with dementia is quickly growing. In fact, getting dementia might mean we are lucky, as we are getting used to change now, as it is happening inside our brains and bodies every single day. On top of that,…
Working in a not for profit organisation, and as an advocate and activist for people with dementia, I have seen in the sector, and of course, in all other sectors I’ve been involved in, some huge egos. One interesting challenge people with dementia are facing is more than other peoples egos though, it is our…
There are those who would say it is simply not possible to build capacity in people who are losing capacity, and yet, there are many people with intellectual disabilities, or changed cognitive capacity including people with dementia, who have learned new things, and who have learned to do things differently in order to continue to function. It…
Obviously Irving Kirsch is well ahead of his time, and I feel ignorant having not ‘found’ him until connecting with a man, now a good friend who lives in the UK and writes an inspirational blog about his experience as a care partner for his wife. Thanks Paul!
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…
Harry Potter and the Dementors is a topic I have written about before here, to describe the feelings I still sometimes have about the effects of having dementia. The Power of Language and dementia, language and respect, and language in general and the rights of people with dementia to decide what is and what is…
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