As we wait for the announcement of Australian of the year* this post looks at some of the writings of deserving nominee and South Australian of the Year, Kate Swaffer.
A humanitarian, advocate and activist for people with dementia, Kate Swaffer was diagnosed with the disease in 2008, just before her 50th birthday. Refusing to be defeated by the diagnosis, Kate has helped redefine the way the world views dementia .
An accomplished author and poet, Kate has written blogs, books and articles advocating for life beyond a diagnosis of dementia. Kate’s writings provide an invaluable insight into one person’s journey and thoughts about living with dementia.
*2017 Australian of the Year will be announced on the eve of Australia Day, Wednesday 25th January. Congratulations and all the best to all nominees.
Book: What the Hell Happened to My Brain? : Living beyond dementia / By Kate Swaffer (2016)
With chapter headings such as Why me, why this, why now?; The dementia train and not sweating the small stuff and Reactions to dementia: yours, mine, others Kate tackles head-on stigma, inadequacies in care and support, and the media’s role in perpetuating myths about dementia, suggesting ways in which we can include and empower people with the diagnosis. She also reflects on the ways in which her writing and dementia advocacy work have taken her on a process of self-discovery and enabled her to develop a new and meaningful personal identity.
Editorial: Dementia and Prescribed Disengagement™ / Kate Swaffer
Dementia: the international journal of social research and practice, Vol. 14, No. 1, January 2015, p.3-6
Following a diagnosis of dementia, most health care professionals, including neurologists, geriatricians, physicians, general practitioners, and dementia service providers prescribe giving up a pre-diagnosis life and put all the planning in place for the demise of the person newly diagnosed with dementia such as wills, powers of guardianship and other end of life issues. I was told ‘to give up work, give up study, and to go home and live for the time I had left’. By 2009, I had termed this Prescribed Dis-engagementTM, and I ultimately chose to ignore it. One has to ask the question: Why is it that one day I was studying a tertiary degree, working full time, volunteering, raising a family and running a household with my husband, and the next day, told to give it all up, to give up life as I knew it, and start ‘living’ for the time I had left?.. Access full text
Article: Not just a ‘challenging behaviour’ / Kate Swaffer
Australian Journal of Dementia Care, Vol. 4 No. 3 June/July 2015, p.21-24
Kate highlights her concerns that widespread use of the terms ‘challenging behaviours’ and ‘Behavioural and Psychological Symptoms of Dementia’ (BPSD), over-perscription of antipsychotic medications and the guidelines used to ‘manage’ BPSD are having a negative impact on care, whilst fuelling stigma and discrimination.
Article: Reinvesting in life is the best prescription / Kate Swaffer
Australian Journal of Dementia Care, Vol.3, No. 6, December 2014/January 2015, p.31-32
When Kate Swaffer was diagnosed with younger onset dementia, she was advised to give up work, study and life as she knew it, put her affairs in order and investigate aged care options. Instead, she ignored this ‘Prescribed Disengagement™’ as she terms it, and reinvested in life – something she recommends to everyone who has been diagnosed with dementia.
Book: Diagnosed with Alzheimers or another dementia / Kate Swaffer & Lee-Fay Low (2016)
This book is an affirmation that dementia is a word not a sentence. A diagnosis is the beginning of a new phase, one that most of us fear, but one that can be met and challenged. There is so much that we – people with dementia, family care partners, friends, or aged care and health workers – can all do to maximise a positive life for many years.” (from introduction by Prof Henry Brodarty)
To find a full list of Kate’s books, articles, poetry and presentations go to her website