The CEO of Dementia Alliance International – who lives with dementia –  has made it her mission to stand up for others with the same diagnosis, to ensure they’re not denied their human rights.

‘’I’m advocating against institutionalised care, I’m advocating against secure dementia units,’’ she said. 

‘’You only lock criminals up. You don’t get locked up for heart disease or AIDS – why should you get locked up for dementia?’’

The Adelaide woman has strong ties with the region after completing a Masters of Science in dementia care at the University of Wollongong, and is now undertaking a PhD. Thankfully she didn’t listen to the advice of health professionals upon her diagnosis of younger onset dementia nearly a decade ago, at age 49.

‘’I was told to give up work and study because it would be too stressful,’’ she said, ‘’to get my end-of-life affairs in order and get acquainted with aged care. 

‘’It’s the only disease where you’re told to give up and not fight for your life.’’

Ms Swaffer told the packed forum that the healthcare sector needed to take a fresh look at what they were NOT doing for people with dementia.

‘’In May 2017 at the World Health Assembly, a global action plan on dementia was adopted,’’ she said. 

‘’What that means is that people like me aren’t just going to be nagging for rehabilitation at the time of diagnosis and for proactive disability support, we are going to be demanding it.’’

The forum also heard from Lake Illawarra resident Terry Rushton. The 64-year-old was diagnosed with dementia in 2015, but it was a head injury at 18 that he said put him at greater risk of developing the condition.

‘’I’ve had a 14mm hole in my brain since I was 18 when I had a motorbike accident,’’ he said. ‘’It was only a couple of years ago though that I started noticing I was getting a bit angry with people, which wasn’t like me. The subsequent diagnosis was a complete shock.’’

He said he doesn’t like to dwell on his diagnosis, but said the forum was a great way to gain insight into the condition.