Although the greatest known risk factor is increasing age, and the majority of people with Alzheimer’s disease are 65 and older, Alzheimer’s disease is not just a disease of old age.

Up to five per cent of people with the disease have early onset Alzheimer’s disease (also known as younger-onset), which often appears when someone is in their 40s or 50s. Contrary to popular belief, Alzheimer’s disease is not a normal part of ageing.

The Australian Institute of Health and Welfare (AIHW) estimates more than 320,000 Australians are living with some form of dementia, Alzheimer’s disease being the most common. For Queensland, based on population projections, that means the number of cases will reach 78,600 by 2020.

Forgetfulness and difficulty recalling familiar words are among the early signs, and in the mid-stages of the illness those affected often struggle with regular activities such as shopping, handling money and driving. Often these signs are dismissed as just a part of getting older and becoming a little more forgetful or confused.

The later stages bring difficulties with everyday tasks such as eating, bathing and dressing and many of those afflicted will be cared for at home by their spouses, siblings or children.

Robyn Holdway understands exactly the impact of having someone close to you suffering from Alzheimer’s disease. She’s unable to pinpoint exactly when this sinister disease first crept into her mother’s brain—but she certainly knows what it stole from her family.

Robyn’s mum, Phyllis, had been a woman of her era—a much-loved wife and mother who was quietly spoken, but with a determination that made her very capable of getting things done. Sadly, that quiet determination helped to mask the early signs that the disease was starting to take hold.

“Mum didn’t want us to know that something was wrong and pretended that she was fine,” Robyn says. “At first I noticed that she seemed to be more anxious about things she previously hadn’t worried about. It was out of character for her.”

Later, that anxiety would come out in fits of frustration. Robyn recalls: “She would just stamp her feet, and shout in anger. As a daughter, it was heart-wrenching to watch.”

Robyn describes her mother’s Alzheimer’s years as “hellish”, but she has to disagree when people dismiss dementia as being worse for the family than it is for the person living with it.

“Many people think that if a person has Alzheimer’s disease they are not aware of what is happening to them. I couldn’t disagree more. They know they are losing their way of life and independence.”

Robyn can’t stand to think what it must have been like for her mum to live in a constant state of fear, and it’s why she wants people to learn and understand more about dementia. She wants communities to be better equipped to support those either suffering with the disease, or caring for a family member with it.

Every Tuesday, Robyn can be found enjoying the company of a fascinating group of people as she assists them in a dementia-friendly dance program run by the Queensland branch of Alzheimer’s Australia. It’s designed to empower people with dementia to participate in their community while engaging in social and physical activity. Unfortunately, this kind of activity is very much something of a rarity. Robyn wants people to come together in similar situations to share their stories and create more dementia-friendly communities. She’s keen to put an end to people with dementia feeling afraid to venture out.

QIMR Berghofer Medical Research Institute is a Queensland icon. Established in 1945 by an act of parliament, it has grown from humble beginnings with responsibility for malaria control work for the Australian Army to become the world-class medical research institute it is today.

One of the Institute’s key research areas is mental health. Researching dementia and growing our understanding of this devastating disease and how to limit or even reverse its damage to the brain, is a key priority.

QIMR Berghofer researcher Dr Christine Guo says: “It is usually hard to differentiate dementia from normal ageing in the early stages. At the moment we can really only diagnose the patient at pretty late stages, when the cognitive function is damaged and a large part of the brain has already degenerated.”

Dr Guo and her colleagues are working towards developing an objective test for early stage dementia. Working with geneticists, they are investigating ways of identifying people who may be at high risk and looking for ways to detect the very early signs of dementia. The research will also provide a unique opportunity to formally test what role lifestyle factors such as physical exercise and diet play in the advancement or halting of the disease. By catching the disease early, we will be in a good position to investigate how to slow down, or even reverse the damage to the brain that dementia causes.

To fully understand all these complex factors will take time, commitment and resources. Medical research of this intensity and importance requires significant funding and for every dollar the Institute receives in government funding, QIMR Berghofer must raise an additional .65 cents to make it possible. Looking back, Robyn now believes Phyllis showed the early signs of Alzheimer’s disease up to a decade before she was diagnosed.

She hopes that sharing her family’s story will increase awareness, and encourage other families to recognise and act on early symptoms.

Packing up her Mum’s house after her death brought home again how much the disease had affected her. She says: “I’d find so many multiples of things, like five electric fry pans. It was as though she’d buy something, forget about it and then buy another.”

Phyllis passed away at age 86, eleven years after being diagnosed with Alzheimer’s disease. Robyn says she appreciates the time spent sharing Phyllis’s journey because it taught her to live in the ‘now’ and to appreciate every moment.

To donate to the dementia research being carried out at QIMR Berghofer visit https://support.qimrberghofer.edu.au/

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