Strong voice speaks up on dementia stigma
It used to be cancer that people whispered about, Graeme Samuel says. Now it’s dementia.
“We’ve moved from the ‘C’ word to the ‘D’ word. Some people still consider it unmentionable,” the former chair of the ACCC and now chair of advocacy group Dementia Australia says.
“Dementia is cloaked in stigma and misunderstanding, but things are changing,” he says. “We can’t prevent it or cure it, but awareness and knowledge of dementia in the community is slowly coming into the light.”
Mr Samuel points to two new films — The Father starring Anthony Hopkins and Supernova with Stanley Tucci and Colin Firth — that deal head on with characters afflicted with the disease.
In an address to the National Press Club on Wednesday, Mr Samuel will offer a deeply personal account of the experience of his mother Shirley, who lived with dementia for 15 years until her death at 84. Watching her deterioration was the catalyst for his decision to advocate on behalf of the more than half a million Australians now living with dementia, the 1.6 million who help care for them, and the 2000 people a week who are being newly diagnosed.
Dementia is the second leading cause of death in Australia behind heart disease, and the leading cause of death among women. Prevalence is expected to triple by 2050 without a medical breakthrough as one in five people over 65 succumbs to the illness.
Mr Samuel says his mother’s journey with “this insidious disease” started at the age of 70 with the sudden death of Ralph, her husband of 40 years. Her four sons put the initial indications, perhaps romantically, down to the effects of a broken heart.
But those early telltale signs — being overwhelmed by simple things, repeating herself — were soon medically diagnosed as the early stages of dementia, most likely Alzheimer’s disease.
“(There were) accidents, getting lost and making phone calls in the middle of the night to check whether it was time to get up for breakfast,” he says.
“Each morning she would call the caretaker in her apartment building because her toaster and kettle were not working — she didn’t know how to turn them on.”
Mr Samuel says his family faced the same dilemmas as so many who care for older people with dementia, first in trying to manage to support their loved one in their own home, and then having to decide whether to find them a place in residential aged care.
“Was the debate about her needs, or was it about our consciences, her children? If we delayed her transfer to residential care until she was not aware of what was happening, would that have made it easier for us?,” Mr Samuel says.
His mother died several years ago “after 15 years of confusion, bewilderment, frustration, torment and unbearable distress”.
Mr Samuel is now urging the Morrison government to use its final response to the report by the aged care royal commission as a catalyst for greater dementia support, care and research.
He outlines the priorities contained in Dementia Australia’s road map for quality dementia care, which emphasises improving timely diagnosis of the disease and access to appropriate supports; building capability in the care workforce to care for the specific needs of people with dementia; and driving dementia-friendly building design.
“Only one in three of those of us who develop dementia can expect to be correctly diagnosed,” Mr Samuel says. “And even for those who are diagnosed at all, the average time between first symptoms and diagnosis is more than three years.”