An Australian woman diagnosed with young onset dementia is inspiring others by living beyond her disease.
She's just been named in Australia's '100 Women of Influence' and is in New Zealand to attend the International Alzheimer's Conference.
Kate Swaffer was diagnosed with dementia eight years ago, aged just 49, and was more or less told to give up on life.
"I wasn't given a sense of hope and future - I was really told to get my end-of-life affairs in order and to get acquainted with Aged Care and give up work."
Instead she wrote a book called What the Hell Happened to my Brain?, completed a Masters of Science in Dementia Care, started an international organisation called Dementia Alliance International - and is now studying for her PhD.
"It's very clear that, with support, people are living well and truly much more dignified, productive lives than perhaps was once projected upon us. I think there is a gross underestimation of the abilities of those with dementia," she says.
She says the developed world has worked hard on early diagnosis, but is all too often giving advice appropriate for late stage dementia.
One of her global goals is to get the health care sector to change the way they manage people with early dementia.
She says her initial diagnosis in 2008 came as a huge shock. It started with acquired dyslexia - she had high-level maths and English skills but suddenly found she couldn't spell 'that' and couldn't work out how to use 'there', 'their' and 'they're'.
She also started seeing numbers back to front and colour sets mixed up but had no clue they were symptoms of dementia.
Although she's kept her mind exercised, daily life still has its challenges.
"I travel with a laminated cheat sheet about how to pack, what to pack. There's a large laminated sheet about how to use a coffee machine and in fact a reminder to offer guests a cup of tea or coffee," she says.
"And a list at the front door about, don't forget to take your keys and your handbag and your walking stick, which I've forgotten today."
Around 60,000 New Zealanders have dementia. That figure will nearly triple by 2050.
The latest World Alzheimer Report warns that countries like New Zealand are unprepared for a surge in dementia cases and need to take urgent action to deal with the issue.
The race is on to find a cure, but Ms Swaffer pins little hope on a magic bullet.
"I would really like to see a balance of research money being spent on improving the care of the more than 47.5 million people currently diagnosed with dementia and our families."
She says there's no shame in the neurological disorder, and urges those who are noticing symptoms to get to a doctor.
Newshub.
