“Living Beyond Dementia” #DAW2016
It is a delight and honour to have been invited to Scotland as a speaker for their upcoming Alzheimer Scotland Dementia Awareness Week National Conference 2016, Global to Local: research, practice, innovation, on Friday 3 June, in Edinburgh.
I’m thrilled to be sharing what living beyond dementia, which is my preferred term to support anyone who has been diagnosed with dementia, actually means; it is a way of helping others to think about the possibility of living more positively with dementia.
Alzheimer’s Disease International have a Global Charter, Living well with dementia and for some time, I had thought that term was positive and helpful. However, not only do almost no health care professionals or service providers tell us how to ‘live well with dementia’, they rarely tell us that living well, living positively or living beyond dementia is even possible.
Living well with dementia is yet another slogan, just like “Nothing about us, without us’ still is; this has been a slogan for more than 20 years ago, and is still the exception and not the norm.
The terms living well or living better too easily imply someone may not be living well, e.g. not ‘doing enough’ to be able to live well, or the term living better (or worse) than someone else. It could easily be seen as being too prescriptive, and to either ignore or dishonour the very real challenges we face after being diagnosed with dementia. Dementia is, after all, a terminal, progressive, chronic illness that ultimately causes significant disabilities, and our functioning and capacity to become impaired.
Public and health care professionals perceptions of people with dementia, which are fuelled by the negative discourse used in the media and by most people when writing or talking about people with dementia, continue to suggest it is simply not possible to live well with dementia, or indeed, beyond the diagnosis. It focuses on suffering, and our deficits, and I plan during my time in Scotland to focus on the positives of living with dementia.
In my presentation I will also discuss the Prescribed Disengagement® we almost universally receive, and share what that is, and the negative impact of it on not only people with dementia, but on our families and care partners. I will compare the current medical pathway of care being offered to us, with one that I have used and teach. This is a bio social and rehabilitative post diagnosistic pathway of support for people newly diagnosed with dementia that is enabling and empowering, not disabling and disempowering.
People with dementia must not only be seen as full citizens, we must be given the same as others in line with the UN CRPD, and this includes support for disabilities and rehabilitation, in exactly the same way someone would be offered following a stroke or brain injury after an accident.
My presentation will challenge some, but I hope, will also inspire many to see it is possible to live beyond dementia, and to share this information beyond the conference to others.
Kate Swaffer © 2016
Author, Advocate, Activist, Speaker
Chair, CEO, Co-founder, Dementia Alliance International
Member, World Dementia Council
Board Member, Alzheimer’s Disease International
Chair, Alzheimer’s Australia Dementia Advisory Committee
Co-chair, Alzheimer’s Australia Consumer’s Dementia Research Network
To hear Kate speak on the 3rd June at the Alzheimer Scotland annual conference and to find out more about the conference you can click on the links below:
Conference programme: http://conference2016.daw.dementiascotland.org/programme/
Ticket booking: http://conference2016.daw.dementiascotland.org/register/
We would also still like to extend our thanks to ALL our blog followers & contributors we are still offering you a discounted rate of £95.00 until 29 April.
This blog was also posted on our conference blog on the 15th March http://conference2016.daw.dementiascotland.org/blog/