The high and lows of social media continue to confound me! I joined LinkedIn some time ago, and get a huge number of requests to connect now from people who I don’t know personally. Because members on LinkedIn profess it is a ‘professionals’ site. What a load of rubbish!!! So many professionals on LinkedIn must be living under a mushroom. Call…
For many years, I have written about the things that stand out to me as wrong about the way dementia is seen, talked about, or managed for those of us living with it, not only dying from it. One issue that is very prevalent is that many doctors still do not bother to tell some of…
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…
It is a big week for DAI members in the UK as today is the beginning of Dementia Awareness Week in the UK. To coincide with it and the acceptance of a human rights approach to dementia by ADI and the ADI Council members in Budapest, Dementia Alliance International is releasing its first official publication on…
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…
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