It came on slowly, with simple signs such as forgetting something, becoming overwhelmed easily, or repeating herself.
But as the mental state of the mother of prominent Australian businessman Professor Graeme Samuel deteriorated, the family discovered it was more than that.
Shirley had dementia.
Dementia Australia President Graeme Samuel AC, the former leader of the Australian Competition and Consumer Commission, has laid out his own family’s challenge with the condition in an address to the National Press Club.
Detailing Shirley’s decline and the emotional journey the whole family went through, Mr Samuel also called for an overarching and comprehensive national response to the disease that already affects 500,000 Australians and is on track to directly affect 1.6 million by 2050 without a medical breakthrough.
“Dementia is one of the largest health and social challenges facing Australia and the world,” he said.
“It is also the least recognised or understood.
“As all of us working in the field know, dementia is a terminal and devastating condition that robs people of their abilities and memories”.
“It is cloaked in stigma and misunderstanding, it isolates people from their social networks, and it carries enormous social and economic consequences.”
Professor Samuel said the social impact of dementia and its effect on a person’s community can be just as devastating as the disease itself, highlighting his own mother’s experience feeling excluded from the friendships of a lifetime.
“We dealt with the frustration of her friends who had difficulty in coping with her behaviour and gradually ceased to be her companions,” he said.
“Sadly a lifetime of friendship did not store up enough reserves of care and compassion to help carry her through her tough journey.”
He said there was an urgent need to prioritise a three-pronged approach to Australia’s dementia response, through research, dementia-friendly communities, and quality of care.
In research, he said Australia has been world-leading in its studies into the early detection, progression and management of Alzheimer’s Disease.
This has, in turn assisted researchers to develop new diagnostic techniques, investigate the impacts on carers and develop ways to improve the quality of life for people living with dementia and their carers.
He said one area of interest was in developing ideas about diet and lifestyle factors that may delay the impacts of the disease.
“It is becoming clear that the earlier we can identify the disease commencing, the greater the potential to take action to reduce the risk, slow its advance or even halt it in its tracks before it has done its irreversible damage,” he said.
“But while researchers continue relentlessly in search of a preventative drug, the horizon of success is still a long way in the distance.”
On the road to prevention, Professor Samuel has called for a more dementia-accepting community and better care.
He said three out of five Australians surveyed said they would feel shame and humiliation if they were diagnosed with dementia.
“Tell me another disease that in this day and age would bring such a sense of shame,” he said. “Interestingly, the same survey showed that people often turn away from a person who has dementia – they feel uncomfortable spending time with them.
“If we are to pride ourselves on being a caring community, we should all be committed to reducing the stigma and social isolation that attaches to a diagnosis of dementia.”
He said there were simple ways the community could become more dementia-friendly, including encouraging workers at banks, shops and other organisations learning how to communicate with people with a cognitive impairment.
Continued social engagement for people with the diagnosis, through volunteering or sharing their experiences with a buddy, can also help.
He lauded the services of Dementia Australia in assisting those living with the condition, as well as their families and carers.
Finally, he called for better and more available quality dementia care.
He said consumer choice and empowerments should underpin services, with ongoing reporting and measurement to ensure accountability and continuous improvement.
“This requires a fundamental shift from a compliance, minimum standards approach, to one which focuses on improving quality and providing information to consumers about quality of care – empowering them to make an informed choice so that they, in a virtual collaboration with the regulators, will weed the poor providers out of the system,” he said.
“We need to establish a higher priority for dementia friendly respite care, and an expansion of home care services that enable the family carer to continue caring for the person with dementia longer in the community if that is their choice.”
He said design modifications and IT-enabled advances could assist people to care for those with dementia while allowing independence and wellbeing.
Professor Samuel called for the roadmap for personalised support pathways, increased workforce capacity and better design to improve overall outcomes for those with dementia.
He said this was vital not just for them, but for all of us.
“My mother is at last at peace,” he said.
“But how can any of us be at peace whilst the causes of her demise, indeed of hundreds of thousands of others who have passed away with dementia, remain unsolved, the means of prevention and cure remain undiscovered and the care for those living with dementia is capable of improvement to provide a better quality of life.
“Remember this is not only about them – it is also about what the future holds for you and me.”