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Author Kate Swaffer on living beyond dementia diagnosis

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Kate Swaffer is a poet, the author of two books, a sought-after public speaker and daily blogger for an audience of thousands around the world. 

Words are a big part of her life.

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Unspoken impact of Dementia

Three Australians living with dementia tell of their experiences being diagnosed and learning to deal with the often misunderstood disease.

But her easy-to-read blogging style, a list of impressive publications and her brutally honest advocacy – which has helped place her on the shortlist to become this year's Australian of the Year – don't tell the full story.

For the 58-year-old mother of two, posting one short blog entry can take many hours, because she sometimes needs to stop and look up the meaning of each word in a dictionary. 

Writing academic essays – a key part of the PhD she's doing at the University of Wollongong – can be an exercise in frustration, as she needs to watch and re-watch YouTube videos on how to correctly reference them.

And when she's travelling – maybe to Geneva, Toronto or, often, to the Illawarra for study – she carries laminated cards to help prepare for her public appearances.

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"One is for the bathroom, for the occasional time I can't work out what to do in the shower," she says. "Or if I get confused getting dressed, they tell me what order to put my clothes on."

The Adelaide woman, who has just been named South Australian of the Year, was diagnosed with early onset dementia eight years ago, just before her 50th birthday.

The disease first manifested in symptoms which altered her speech, writing and comprehension.

"So I was doing a psychology degree, and often having to look up the word psychology," she says. "I was getting lost in the country in the car and not knowing where I was for two or three hours. Because of my acquired dyslexia symptom, I was driving down streets the wrong way into oncoming traffic."

Ms Swaffer remembers being told to "go home, get your affairs in order, spend time with your family – oh, and maybe think about spending some time at daycare because you'll need to get used to it'."

"It was horrible, I cried for weeks," she says.

It's the only disease I know of where you're told to go home and die, not fight for your life.

Like others she has met during her eight years of advocacy, she contemplated suicide.

"You're 49 or 50 years old and you've been told to give up everything," she says. "You're fearing the end stage, everything you read is about suffering. What the hell's the point of being alive?"

But slowly, a bubbling anger took over.

"The day I was diagnosed, I'd dropped the kids at school, I'd fitted in a couple of lectures at uni, I'd done two sales pitches to hospital staff. I then went to the doctor, got the diagnosis and over the next few weeks was told by everyone to give it all up," she says. 

"How could it even be logical that now you've got dementia, so you can't do anything? It's the only disease I know of where you're told to go home and die, not fight for your life."

Instead of giving up her undergraduate degrees at the University of South Australia – "I was told it would be too stressful" – Ms Swaffer went to the disability support unit, which taught her to see the symptoms of her neurological disorder as manageable disabilities.

"I had speech pathology early, I still have it regularly. I was taught some techniques for word finding, and speech formation, and I'm very disciplined. The disability support that I do, it's the Olympics of my life.

"It's like a swan on the lake, serene and calm, but it's staying afloat by paddling fast. I'm padding faster and faster and faster."

"At home, I have cheat sheets on how to make the coffee. If I'm hot or cold, I forget what to do to rectify that situation – my husband will walk in and go 'you're freezing, go and put a jumper on' and I'll be like 'oh, yeah'. 

"A lot of the automatic stuff has gone, but does that mean I should go home and get ready to die?"

Ms Swaffer says her defiance of the advice she has received – which is still given to the many thousands of people diagnosed with dementia each year – has given her life a strong purpose in the past eight years.

She has travelled the world speaking out about dementia, at the World Health Organisation's first ministerial convention on dementia, at political rallies and on numerous boards and advisory groups.

In 2014, she co-founded Dementia Alliance International – which she describes as "a group of seven people from four different countries who were sick of other people speaking for us". 

It now has thousands of members, in 38 countries, and is committed to improving human rights and quality of life for the almost 50 million people worldwide who have been diagnosed with dementia.

In 2014, Ms Swaffer graduated from a masters of dementia care at UOW and is now part way through her doctorate. Her research explores dementia through "autoethnography" – which essentially means she's charting and studying her own experiences.

"When you're looking at your own terminal illness and progression of symptoms and experiences of discrimination and stigma, you have to relive all that stuff to be able to write about it," she says. "It's a peculiarly painful experience."

"But I'm particularly interested in whose story this is to tell. Because predominantly the narrative in the public domain about the experience of living with dementia has been written by people without dementia."

Words have become her armour, her memory and a way to change the way the world sees people with dementia.

"I'm the language police on dementia because in the media, all anyone ever does is talk about our suffering," she says. "So people stop looking at you, they stop talking to you, they stop coming to visit. It's fear, the narrative of 'suffering'. And it's a gross underestimation of our capacity." 

Busier than ever due to the awards and accolades that keep coming in, Ms Swaffer says it's the smaller things that keep her going.

"The thing that gets me out of bed every day is the absolute passion to teach people with dementia how to live with it, not only die from it," she said. "It's the idea that we can live an okay life. Yes, some days are horrible, but we can have a lot of fun still as well." 

Illawarra Mercury

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