“When my glass gets empty I fill it up again!” says Kate Swaffer, an
author and advocate for living beyond dementia. “When someone knocks me down, I
refer to myself as a skittle in a bowling alley – I just pop back up. Not
immediately, but sooner or later.”
When it came to developing dementia in 2008, it was a matter of sooner –
not later – for Kate who was preparing to celebrate her 50th birthday. “Being
diagnosed with a younger onset dementia mid-life was a real shock,” she says.
“I had no idea young people could get it, even though I had worked in dementia
and aged care.”
Kate was diagnosed with early onset
dementia at 49, a time when she was working full time, studying part time and
taking care of her husband Peter (above) and two teenage boys. Pic Dean Martin
Kate’s first symptoms were a form of acquired dyslexia, “Which was
confounding but easily compensated for initially,” she says. But it was her
initial and enduring response to being diagnosed with dementia that has set
Kate apart.
From the start she refused to be defeated and soon set about helping
redefine the way the world views dementia. Her dedicated, volunteer work in the
years since has led to improvements to the services and outcomes available to
the 354,000 Australians who are currently diagnosed.
Kate has also completed three degrees since and is presently undertaking
her PhD. Today, as Chair, CEO and Co-founder of Dementia Alliance International
(DAI), she is a leading advocate for the 47.5 million people around the globe
who live with dementia.
“I grew up on a farm on the Eyre Peninsula,” says Kate. “It was an
existence that required resilience and certainly taught us how to overcome not
having a lot of cash, and not having the conveniences we expect in the cities.”
It was in this environment Kate discovered she had a hard-wired
compulsion to help others. “At school, I was involved in fundraising and this
interest in volunteering has continued into my adult life,” she says. “I have
volunteered for social justice issues, or in service to my community for a
significant amount of time since school and have always had altruistic
tendencies.”
Kate says the global response to the tens of millions of people with
dementia (and there is a new diagnosis every 3.2 seconds) has been slow.
“Including in Australia,” she says. “And only now is the World Health
Organisation writing a Global Action Plan for Dementia.”
She considers the conclusion of the OECD – based on an exhaustive study
of the world’s 38 richest countries – that dementia receives the worst care in
the developed world to be “frankly, unacceptable.”
Change is needed, for example in the approach for all people diagnosed
early in their dementia. “To maintain independence for as long as possible, and
to stop promoting early dependence on families and then the health sector,” she
says.
Kate says the health sector is currently still providing “late stage”
management of dementia for people more often now being diagnosed in the earlier
stages. “I may have been diagnosed with dementia,” says Kate, “but frankly
there was no point taking on an assumed death that day.”
Indeed, she has instead assumed a role in helping everyone with dementia
live a fulfilled life. “My goals are to actively support people diagnosed with
dementia through our free online support groups, cafes and webinars, and to
empower others diagnosed with dementia to live with it, and not just go home
and die from it,” she says. “It is possible, and DAI is leading the way and
proving it is possible. We have become the global voice of people with dementia
and this is getting stronger.”
A world-changing force borne of the farmlands on the Eyre Peninsula: “If
someone says it cannot be done, I am likely to give it a go,” says Kate.
“Especially if I believe it needs doing, and even if initially I stand alone.”
CommBank have been proud partners of Australian of the Year Awards for
over 37 years, celebrating and championing those who make our country a better
place. The awards honour an extraordinary group of respected Australians, whose
actions inspire conversation on issues of national importance.
SOURCE: News Corp Australia, Staff Writer
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