A dementia diagnosis isn’t the end of your life

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Kate Swaffer is an Australian activist with dementia who challenges the comon belief that the only thing left to do after diagnosis is prepare to die

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2nd May 2016 by TFN Guest 0 Comments

It is a delight and honour to have been invited to Scotland as a speaker at the 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 has 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.

Kate Swaffer

Kate Swaffer

Public and health care professionals perceptions of people with dementia continue to suggest it is simply not possible to live well with dementia

Living well with dementia is yet another slogan, just like "nothing about us, without us", which has been a well-known slogan for more than 20 years ago but is still the exception and not the norm.

The terms living well or living better too easily imply someone is not living well, e.g. they are not doing enough to be able to live well, or better (or worse) than someone else. It could be easily seen as too prescriptive, ignoring or dishonouring 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 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.

Prescribed Disengagement is the term I use to describe the advice that health care professionals and service providers give to people with a dementia following diagnosis; "to give up work (if still working), get our end of life in order, and get acquainted with aged care".

In effect, they encourage us to disengage from the things that make us us and plan for our death, but with no support for living, or for it being a chronic, often long-term progressive and terminal illness. I believe that shaking up this negative prescription and creating a more positive approach has the most potential to change the experience of living with dementia for others. 

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 Convention on the Rights of Persons with Disabilities, 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 lives in Australia and is an author, advocate, activist and speaker and she is co-founder of Dementia Alliance International

TFN readers can access a special discount rate of £95 – that’s £55 off the full ticket price. Just go to www.alzscot.org/yourdiscount and select the special rate. Booking closes on Friday 16 May.