My mother was diagnosed with dementia. I am doing everything to minimise my risk

Australia Broadcast Center

05-07-2025

After witnessing my mum's cognitive decline and with dementia now the leading cause of death for Australian women, I can't help but wonder: Will I be among them?
I started noticing changes when my mum was around 92 but it was only in hindsight that I realised something was wrong. Her dementia symptoms emerged so gradually I couldn't tell where "Old Mum" ended and "New Mum" began.
One day, after a live taping of the TV show I presented, I sat around chatting with the guest and crew. I'd invited my parents along and they too were in the Green Room.
Mum turned to the guest and asked, "Where did you say your family were from?"
Oh God. Where was Mum going with this? She had asked a few people the 'background question' lately. Should I intervene?
My guest that day, editor and media entrepreneur Mia Freedman, said her family was from South Africa.
"I know someone from South Africa!" Mum replied.
No you don't! Why is Mum fixated on this?
She turned to my father. "What's the name of that nice man at the food hall?"
I held my breath. The person she had in mind wasn't from South Africa.
"Rajan," replied my ever-diplomatic dad. "He's from Nepal."
Mum sounded surprised. "Nepal!" She repeated, laughing at her mix-up. I thought he was from South Africa!"
"Your mum is a such a hoot!" Mia said, laughing uncomfortably too.
Along with my mother's malfunctioning filter, there were other behaviour changes. Wakeful nights and sleeping during the day, hiding the household scissors, seeing little "creatures" that we didn't see.
After Mum had a short spell in hospital, the community nurse suggested I attend a dementia carer's workshop.
Dementia? Surely Mum just has memory loss, the kind you get with old age. She doesn't have dementia, like Alzheimer's, does she?
I never made it to the workshop. I said I was too busy, but privately I wasn't sure I was ready to believe it.
Jane Hutcheon as a baby with her mother, Bea ( Supplied: Jane Hutcheon )
My mother, Bea, could speak, sing, laugh, blow kisses and recall her childhood. She remembered all our names. She just couldn't remember whether she'd eaten or showered yet. And there were increasingly frequent remarks about someone's skin colour or where they were from.
After witnessing my mum's cognitive decline, I can't help but wonder: with dementia now the leading cause of death for Australian women, will I be among them? The thought is terrifying.
The quiet arrival of Alzheimer's disease
In the 1990s, researchers unearthed a blue file belonging to Bavarian neuropathologist Alois Alzheimer that had been written almost a century earlier. Inside were case notes for his patient Auguste Deter, a 51-year-old woman hospitalised in a Frankfurt psychiatric facility — referred to locally as the Castle for the Insane.
Despite Frau Deter's relatively young age, she exhibited symptoms of advanced cognitive decline. From 1901, Alzheimer meticulously documented her condition, combining interviews, observations, and drawings. He recorded her confused speech, paranoid jealousy, and memory loss. His report began: "She sits on the bed with a helpless expression..."
After Deter's death in 1906, Alzheimer examined her brain tissue using the most advanced histopathological and nerve-staining techniques of the time. Under the microscope, he observed unusual plaques and tangles, which he carefully sketched as part of his report. Though Deter was not elderly, her brain told another story.
Illustrations by Alzheimer showing neurofibrillary tangles and amyloid plaques. The images were included in Alois Alzheimer's 1911 article describing the cases of Auguste D. and Johann F. ( Alois Alzheimer 1911 )
Drawings of neurofibrillary tangles by Alois Alzheimer and published in his 1911 paper. ( Alois Alzheimer 1911 )
Later that year, Alzheimer presented his findings in a lecture titled "A characteristic serious disease of the cerebral cortex". Using Deter's case, he had described a rare form of early-onset dementia, but it is unclear whether he saw it as normal ageing or something entirely distinct. Surprisingly, his audience showed little curiosity and there was no discussion after the lecture.
It was Alzheimer's superior, psychiatrist Emil Kraepelin, who framed the discovery as a disease. In 1910, Kraepelin named the condition Alzheimer's disease and included it in the eighth edition of his widely used handbook, Compendium der Psychiatrie.
Alzheimer received no public acclaim during his lifetime. When he died at age 51 in 1915, the discovery of the brain disease that bore his name went unmentioned in his obituaries. The birth of Alzheimer's disease came and went quietly.
"Everything we know about the natural history of age-associated progressive dementia suggests that it has always been part of human experience," says historian Jesse F Ballenger. "But only since the early 20th century has dementia been regarded as the product of a disease, and only in the last half of the 20th century has it been regarded as a major public health issue."
de (out of) mens (mind) ia (state of)
Alzheimer's disease is the most common form of dementia. The rate of dementia in the population rises with age and affects one in 12 people over 65, increasing to one third of Australians in their 90s. Two-thirds of Australians living with dementia are women. Rates are three to five times higher among Indigenous Australians. In rare cases dementia can also strike children. It's estimated 433,300 Australians are affected, with the number expected to balloon to over 800,000 by 2054.
Long before terms like Alzheimer's disease, vascular dementia, dementia with Lewy bodies (DLB), Parkinson's dementia and fronto-temporal dementia entered our vocabulary, the phenomenon of severe cognitive decline was known simply as "senile dementia." Today, according to the fifth updated edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5-TR), the clinical term is "neurocognitive disorder" (NCD).
If symptoms don't interfere with daily activities — like showering or cooking — it's described as mild NCD. If symptoms do interfere, it's classed as major. It's not considered a normal part of ageing.
The word dementia comes from Latin: de (out of), mens (mind), and ia (state of). It appears in the Greco-Roman era writings of Hippocrates and Pythagoras — and later in the works of Shakespeare and others.
A search for "dementia" in the historical newspapers of Trove reveals just how familiar the term used to be. In May 1890, the Illustrated Sydney News published a two-page feature on the Melbourne Benevolent Asylum, noting: "There are many cases of dementia in the asylum and also many patients whose proper place would be a hospital for incurables, but the accommodation, in the only institution of that kind in Melbourne, is too meagre to provide for them."
It wasn't until the 1970s that dementia became recognised as a major health concern. By then, life expectancy in industrialised countries had risen dramatically. In Australia, for example, a woman born in 1900 could expect to live to 59. By 1975 it was 77, adding nearly two decades in just three generations.
In a landmark editorial published in 1976, American neurologist Robert Katzman argued that pre-senile (early onset) and senile (late onset) dementia were part of the same disease. Unlike Alzheimer's discovery in 1906, Katzman's proposal marked a turning point in dementia awareness, treatment and scientific research. In 1980, the redefined concept of Alzheimer's disease was incorporated into DSM-III.
Today, dementia is an umbrella term for more than 100 chronic, progressive, and often terminal brain disorders. Most common dementias (though not all) result from the abnormal accumulation or mis-folding of proteins in the brain. These are the plaques and tangles composed of amyloid-beta and tau proteins, first documented by Dr Alzheimer in the early 1900s. These aberrant proteins are believed to disrupt brain cell function and eventually lead to cell death, impairing thinking, memory and behaviour to the point where independent living becomes impossible.
'Everyone's looking for a cure'
Today, most doctors and scientists view dementia through the lens of disease — something to diagnose, treat and eventually cure, like cancer or diabetes. This perspective is known as the "disease model". But not everyone agrees this model tells the whole story.
For almost half a century, Professor Henry Brodaty AO has been a leading figure in Australian dementia research and clinical practice.
"I think there's so much we can do, says Brodaty, who is a co-director of the Centre for Healthy Brain Ageing at UNSW and honorary medical advisor to Dementia Australia, the national peak body supporting people living with the disease, their families and care-givers. "Everyone's looking for a cure."
Brodaty says multiple drugs are being used to target proteins that are believed to lead to the development of different dementias — including Donamebab, the first new Alzheimers drug in 25 years. While drugs may play a role he argues more work needs to be done.
"Some of my colleagues are much more positive than me, and they talk about a cure for Alzheimer's. But I don't think we'll have a cure," he says, meaning a magic bullet that will "fix" dementia. "Well, not soon, and not for all the dementias."
Alongside drug development, promising research is focused on how lifestyle changes influence the development of dementia.
Seventeen institutions engage in brain research and clinical initiatives across Australia, including Brodaty's team. The Centre for Healthy Brain Ageing's latest trial, known as Maintain Your Brain, found that three years of online lifestyle interventions improved cognition in a group of 6,000 Australians aged 55 to 77 (without dementia). Brodaty now seeks additional funding to extend the scope of the trial from people aged 45 through 80.
At the core of this trial are findings by Britain's Lancet Commission on Dementia Prevention, Intervention and Care. In three ground-breaking reports (2017, 2020 and 2024) the Commission found 14 modifiable risk factors responsible for 45 per cent of the risk of dementia.
"Theoretically," Brodaty says, "if you are able to abolish all those risk factors there would be almost half the number of people with dementia in the world. Having said that, there are people who do everything right and [still] get dementia … so no one is claiming that you can actually prevent dementia. We're really saying that you can delay the onset."
The 14 risk factors identified by the Lancet Commission are:
Quality of early life education
Quality of early life education Social isolation
Social isolation Air pollution
Air pollution Traumatic brain injury
Traumatic brain injury Hearing loss
Hearing loss Depression
Depression High blood pressure
High blood pressure Diabetes
Diabetes Obesity
Obesity Physical inactivity
Physical inactivity Smoking
Smoking Excessive alcohol consumption
Excessive alcohol consumption Uncorrected vision loss
Uncorrected vision loss High cholesterol
Poor sleep quality is also emerging as a potential risk factor given the vital role it plays in consolidating memories and clearing out proteins associated with Alzheimer's disease.
In the Maintain Your Brain trial, participants were chosen because they had at least two dementia risk factors. They were divided into two groups. The control group was given online information only. The intervention group received tailored online coaching in physical activity, healthy eating, brain exercises and mental health.
The outcome was measured by a global cognitive score combining indicators of memory, thinking speed and reasoning. After three years the control group improved slightly just by being given information, while the coached group improved almost three times as much.
The trial showed that personalised lifestyle changes — moving more, eating better, training your brain, caring for mental health — can slow cognitive decline in older adults. The younger participants (55-65) did better than the older group (66-77) and women did better than men, Brodaty says. "We think that starting earlier is better."
A metaphor for our fear of ageing
In February this year, Hollywood actor Gene Hackman was found dead in his Santa Fe home alongside the body of his wife, Betsy Arakawa, and one of their dogs. Investigators determined that Arakawa had died suddenly from a rare respiratory virus, while Hackman — who was living with advanced dementia and multiple health conditions — survived her by five days. Arakawa had been his sole caregiver. It took nine days for their bodies to be discovered. How could a man of such fame and wealth, in the final stages of dementia, be left to die unnoticed?
Joanna Bourke, a professor of rhetoric at London's 400-year-old Gresham College, says there is no mystery about why dementia is so frightening.
"The word Alzheimer has become a central metaphor for our fear of ageing and decline," she says " [It] fuses cognitive degeneration, chronicity and incurability — a most anxiety-ridden triad."
Public perception often fixates on the final stages of the degenerative disease. The idea of gradually losing our sense of self as the brain deteriorates is a difficult idea to consider.
My mum — who died in 2022 — didn't reach the point of not recognising her family, but during the year she spent in residential aged-care, I witnessed what that stage can look like in others. Her neighbours in the ward also experienced hallucinations, delirium, confusion and, at times, violent outbursts. Some had lost the ability to speak; many could no longer feed themselves.
The toll of APOE4
After a long, physically demanding career, Peter Duclos left the NSW Police Force in 2008 after he developed Meniere's disease, a chronic inner ear disorder resulting in tinnitus. His mother, who had Alzheimer's, died in 2017. His father does not have the condition.
After watching his mother struggle with dementia, Duclos became curious and signed up for a clinical trial which included genetic testing. That trial folded suddenly, but not before Peter was told the results of the tests: he carried two copies of the gene apolipoprotein E or APOE4, one from each parent.
Carrying even one copy of APOE4 increases the statistical risk of developing Alzheimer's. That risk can be 10-15 times higher than average for those with two copies like Duclos. Nevertheless, it doesn't guarantee the disease will develop. In 2022, actor Chris Hemsworth revealed he carried two copies of the same variant.
Following the trial, Duclos was on alert for any symptoms.Then five years ago, when he was around the age of 60, there were subtle shifts.
"I had this weird feeling that something wasn't right," Duclos says. "It became harder to automatically say something or recall the name of an object. It might be something simple like 'plate' — but I couldn't remember the word. It just fell away, and it was terribly frustrating."
A series of cognitive tests was followed by brain scans and last year Duclos was diagnosed with young-onset Alzheimer's disease. He is among an estimated 2 per cent of the population with an inherited form of Alzheimer's disease linked to APOE4.
An estimated 2 per cent of the population has an inherited form of Alzheimer's disease linked to APOE4. ( Kylie Silvester: ABC Graphics )
After receiving confirmation of the illness, Duclos and his wife Denise left the consulting room and cried together in the hospital corridor.
The morning after the diagnosis, Duclos had made up his mind about how he would face it. "I didn't go down the track of, 'Why me?'," he says. "I thought, 'Why not me?' I'm going to do the best I can to either help myself or help someone else."
The couple had recently become grandparents and are soon to have a fourth grandchild.
"The only time I ever get emotional is thinking about my daughters and the grandkids," he says. "It's the only thing that makes me wish I had more time. I would love to think that someone will develop a drug that will give me 15 more years. Then I'll be able to have a really good conversation with my grandkids. Maybe I'll write a book for them."
Duclos — who has become an advocate for Dementia Australia — is now enrolled in a second trial targeting people with early symptoms of Alzheimer's using a monoclonal antibody treatment that is hoped to slow disease progression.
He doesn't know if he's received the drug or the placebo.
"A lot of people think this is just part of ageing. It isn't. It's terribly frustrating," Peter says. "The tsunami is coming if we don't stand in front of it and try and deal with it."
'I live in the moment'
Another Dementia Australia advocate, Jessica Harris, cares for her husband Richard who was diagnosed with Alzheimer's disease with Lewy body dementia in 2022.
"I was in shock. We really didn't know how to deal with it at first, to be honest," says Jess, 69. "But since then, we've realised it's not the end of the world. We can manage. We just take it one day at a time and enjoy what we have."
She and Richard, who is 71, stay connected to other couples living with dementia through a local memory group. The couple now receives support from a Commonwealth Home Care Package, which provides a weekly physiotherapy appointment, and fortnightly visits from a gardener and cleaner. Richard also attends a men's group each week. Under the care of a geriatrician, they follow a Mediterranean-style diet, and are virtually alcohol-free — choices they've made based on medical advice.
When we meet at a café on Sydney's Northern Beaches, Jess shows me the app she uses to track Richard's belongings, which he often misplaces. She also monitors his location — he recently got confused on a bus trip and got off at the wrong stop.
Richard takes medication to help with sleep disturbance (he once woke-up after urinating in a neighbour's front yard) and cholinesterase inhibitors to manage other symptoms. When I compliment Jess on how informed and organised she is, she credits her new network.
"That's how I hear about services, events, and what's going on around here," she says.
Richard believes his dementia stems from bad habits. "It was nothing for him to get absolutely shit-faced and not know where he was," Jess says. "He often jokes that when he was younger, he treated his body like it didn't have an expiry date."
The next stage for them, she says, is likely to be assisted living.
Then Jess sighs, the first time I've seen a furrow across her forehead.
"I'm such a Maori," she says. "I look at today, I don't care about tomorrow too much. I live in the moment which is probably the wrong thing to do. It's about getting the best out of the day."
The power of rehab
In a sun-filled wing of eastern Sydney's Uniting War Memorial Hospital, an aged rehabilitation facility run by NSW Health, a group of 20 couples sits in a semi-circle, white files in hand, eyes trained on the presenters. This is the first day of a pioneering program for the newly diagnosed and their care-givers. The group is quiet and probably anxious.
Senior clinical neuropsychologist Dr Wendy Longley and Dementia Clinical Care co-ordinator Christine Sender-Ivanov devised and lead the Integrated Rehabilitation for Early Stage Dementia program, iREADi. The program — free with a referral and the first of its kind in Australia — was launched five years ago. This is its 20th intake. Participants sign up to weekly outpatient treatment for 21 weeks and work with a multidisciplinary geriatric team offering physiotherapy, occupational therapy, social work, psychology, speech pathology, dietetics, geriatric medicine and health-justice law.
"One of the things a lot of people don't realise is that they hear the word 'rehab' and they think, ''I'll get back to where I was'," Sender-Ivanov says. "But rehab is not just that. It's about living a full life, being as independent as possible, finding new ways to do things that you used to be able to do."
Despite strong scientific evidence that rehab can help, Australia has been slow to put it into practice.
"There's tonnes of stuff you can do to manage your dementia better: build up cognitive reserve, improve aspects of your functioning and certainly your wellbeing," says Longley, iREADi's chief designer. "There's even evidence that you can slow the rate of progression with increased physical activity and cognitive stimulation."
The idea of rehab for dementia was introduced to me by Kate Swaffer, who was diagnosed with young-onset dementia at the age of 49, in 2008.
Swaffer is also the founder of Dementia Alliance International, an advocacy support group by and for people with dementia, a former nurse, chef and the 2017 South Australian of the Year. Now a researcher and PhD candidate, she's highly critical of the clinicians with a "fatalistic deficit approach to dementia".
"I was born — as we all were — with a death sentence. If we focused on dying from birth, none of us would bother to get out of bed any day, ever. If dementia can be seen as a brain injury, like a stroke, then why shouldn't I be offered rehab?" she said. The World Health Organisation agrees.
"I've watched other people take a rehab approach and their quality of life and sense of wellbeing is way higher than most people I know with dementia," she argues.
Swaffer describes her self-funded rehab schedule as the "Olympics of my life". Her schedule includes three weekly gym sessions of strength training, flexibility and balance, then hydrotherapy and walking for more than an hour a day.
A speech pathologist assists with speech, affected by aphasia, and Swaffer has also changed her diet. She doesn't smoke or drink and exercises her brain.
"If you've always been a crosswords person, then doing crosswords is not actually working your brain. I've continued studying at a higher level [a PhD]. It's pushing my brain all the time."
Back at the Uniting War Memorial Hospital, the iREADi group is learning to navigate this "unwanted journey", as Longley describes it. After the nine-week education module participants set goals and learn new strategies or take on challenges over a further three months.
"Most of these people have been given very little or no advice since their diagnosis," Longley says. "They pretty much get nothing from their doctors. They're told to get their affairs in order. Live your life and come back when you're a bit worse."
Next-gen treatment
Next year marks 120 years since the discovery of Alzheimer's disease and 50 since its re-discovery in the 1970s. Yet among the Australian public there's a surprising lack of awareness. A 2024 Ipsos survey found 28 per cent of Australians believe there's nothing they can do to reduce the risk of dementia. More than half of respondents were unaware of the 14 risk factors for developing the disease. Two-thirds are not willing to change alcohol consumption to reduce their risk.
Perhaps brain health and dementia education need to begin much earlier. In the same way that Australians receive bowel cancer screening kits for their 50th birthday, a 40th birthday present might target mid-life brain and vascular health since both are closely connected.
And while drug therapy remains important, the real progress will be biomarker analysis — identifying molecules found in the blood or tissue indicating someone's medical state — which could revolutionise early detection of dementia through a blood test.
These new diagnostic tests, less invasive than current offerings including a lumbar puncture, will be available in Australia in the coming year or two and can be used alongside brain scans to confirm dementia pathology.
Such tests also raise ethical questions and Henry Brodaty from the Centre for Healthy Brain Ageing urges caution. "Do you want to know? Why would you?" he asks. "I wouldn't. There's nothing I could do that I'm not doing already."
Brodaty argues there are "downstream implications people need to be aware of".
"Will you have to tell your insurance company? Will it mean you have to have a driving test every year?"
There is good news, too
I've saved the good news until last.
In industrialised countries like Australia, the age-related prevalence of dementia is coming down. In other words, people in their 70s or 80s today are less likely to develop dementia than people of the same age a few decades ago.
Before we get too excited, this doesn't mean fewer people overall have dementia — because more people are living longer — but it does suggest that the risk of getting dementia at a certain age is lower than it used to be.
So, will I develop dementia eventually, like my mum? Maybe. But in my 60s I choose active prevention. I'm also a little less fearful than when I started the research six months ago because I've seen people with dementia seize this capacity to flourish long before they start to diminish.
Dementia is undeniably a terrible disease. But a long goodbye focuses attention on making the most of our minds and our relationships while we still can. And that is a meaningful, and deeply human, pursuit.
Credits
Words: Jane Hutcheon
Editor: Catherine Taylor
Images: Lindsay Dunbar, Kylie Silvester, Alois Alzheimer