The daughter of Hazel Hawke, who had Alzheimer's disease, and the author of two books on her mother's journey, Sue holds lead roles with government, private sector, consumer and advocacy groups that tap into her deep understanding of the many issues around dementia and ageing.
She also uses that experience to consult to and educate aged care industry members on re-framing dementia to reflect the rights and choices of people living with dementia.
Recently Sue used her role of ambassador for the 2018 National Elder Abuse Conference to contribute to improving the understanding of her peers of the links between dementia and elder abuse.
"It's important to not make the mistake in thinking all older people are vulnerable to abuse or that all older people get dementia," Sue said. "A minority of them do. But, age is a risk factor for various things which are risk factors for abuse." She lists being female as one risk factor and the other, when age leads to social isolation.
The National Ageing Research Institute reports at least five per cent, or 180,000, of older people in Australia are reported as sufferers of elder abuse and women are 2.5 times more likely to be victims. Almost 67 per cent of that abuse is inflicted by their children.
"Other risks are different forms of disability, one of which is cognitive disability which is caused by dementia or other things," Sue said. "Others are impaired mobility and increased dependency on other people."
Sue wants the public to understand that dementia is a set of diseases, but people still have capacities as well as impairments. "They need to be treated with dignity and respect as people with individual needs, wishes and preferences rather than stripped of personhood," the passionate advocate added.
Human rights are often what is forgotten in the dementia journey. The right to dignity, safety, respect and personal choice are not always remembered those around older people. "Violation of those human rights - anything which causes harm or damage to a person, whether it be financial, social, sexual, physical, psychological, neglect - we see these as an abuse of a person's right to be treated decently," Sue said.
She reiterates the importance of older people not waiting until it's too late to get good advice and ensure written agreements containing specific requests are in place with their supporters.
"For a long time as an advocate for a greater understanding of dementia and greater support for people for people who care for and about them, we have been working to help people remove stigma and understand dementia as a cognitive disablement of a chronic disease and to argue for the rights of people with any sort of impairment to be supported and protected," Sue said. "That's one of the reasons I work in the areas of positive ageing and anti-ageism.
"Human rights of people with dementia are abused every day by our failures of care and understanding, by our lack of respect, by our stigmatised understanding, by the demonisation and isolation of people with dementia. People with dementia don't have social structure to support their rights and that's something that we are working and fighting for."
The first steps she says to finding a solution to this problem is getting the public to better understand dementia and to maintain respect for a sufferer rather than be dismissive, and which may overlap elder abuse, but still needs to stand on its own.
"We need to unravel it and see what different ways it can occur and then what we are the different things we can put in place," Sue said.
"If we don't do anything about it, by the middle of this century there is going to be 500,000 elders in Australia experience some form of abuse - and that's pretty disturbing."
She also reminds us that dismissing the issues with 'that's not me', isn't a valid argument. "If we don't die young, we will get old and the issues around dementia and elder abuse will be part of our broader community and possibly our own lives as we age," Sue said.
"Combatting ageism and putting in place strategies that can protect our older community members against elder abuse can't remain somebody else's problem.
"A lot of these issues we can deal with. We just need the will to do it," she added.