Alumni stories

Living beyond dementia

Kate Swaffer: 2016 Alumni Award Winner for Social Impact
CEO, Chair and Co-founder, Dementia Alliance International
Master of Science (Dementia Care) 2014

They say when life gives you lemons, make lemonade. Well dementia advocate and University of Wollongong alumna Kate Swaffer has been making litres of lemonade. “I’m squeezing every little bit of lemon juice out of what you would call the lemon of life to make sure that every moment counts,” Kate told the ABC in a 2016 interview.

In 2008, at just 49 years of age, Kate was diagnosed with Semantic Dementia, a rare and debilitating terminal illness. Health care professionals told Kate to get her life affairs in order, quit work and study, and become acquainted with aged care services. To say she ignored this advice would be quite an understatement.

In the intervening nine years, Kate has completed three degrees - including a masters at UOW – and has started a PhD; she co-founded Dementia Alliance International, a global advocacy group recognised as a peak body for people living with dementia; she chaired the Alzheimer’s Australia Dementia Advisory Group; became a member of the World Dementia Council; spoke at the World Health Organisational ministerial conference in Geneva; writes for an international audience of 50,000 people; and was named as a State Finalist Australian of the Year for South Australia.

Kate’s life is devoted to improving the lives of people living with dementia and fighting for their human rights. She says it is unethical to tell people newly diagnosed with dementia to go home and prepare to die.

“It is not only illogical - that one day I was working and studying full-time whilst bringing up a family, and the next day unable to do anything - it does not make medical sense either,” she said.

“Being a university student at the time of diagnosis was one of the two key things that changed my life from despair and fear, to one of truly living beyond dementia. Every university and school or college has disability support for students. My psychology lecturers simply suggested I see the symptoms of dementia as disabilities requiring support and keep living my life.

“In hindsight, this was extraordinarily simple, and absolutely the pathway we should be given if we are diagnosed early in the disease process. It is a more ethical post-diagnostic pathway of supporting us to live with dementia, not only die from it, and we have a basic human right to disability support.”

Kate is working to promote ways to allow people living with dementia to lead productive lives. She also wants to see people living with dementia included in decision-making and treated respectfully.

“I have always had a passion for volunteering, and for social justice and human rights. Since being diagnosed with younger onset dementia, I have discovered just how much we are discriminated against, and have experienced the stigma and poor care first hand,” she said.

Kate won the UOW Alumni Award for Social Impact last year. Nominations are now open for the 2017 Alumni Awards. We are looking for UOW alumni who have created a remarkable impact, are leading their industry, are conducting life-changing research or inspire others with their success. You can nominate someone you know or yourself for the awards. Nominations are open until Friday, 5 May.

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Kate Swaffer's Blog - Creating life with words: Inspiration, love and truth 

Last reviewed: 3 July, 2017