Thursday, 13 October 2016
It is one of the biggest health crises in the world — sometimes called the modern plague — and the statistics about its reach are staggering.
More than 353,000 Australians already live with dementia, the debilitating degenerative disease that robs people of memory, independence and sometimes personality.
That includes more than 33,300 Western Australians, according to Alzheimer’s Australia. Every week, there are more than 1800 new cases diagnosed.
And by 2050, the number of people living with dementia in Australia is expected to be almost 900,000.
It is already our second leading cause of death and an estimated 1.2 million Australians are involved in the care of a person who has the disease.
But while there is no cure, the efforts being devoted to holding back the tide of dementia as the population ages are well underway.
Susan Lynch is painfully familiar with the devastation dementia can wreak on family life.
After losing her mother, older sister and a cousin to Alzheimer’s Disease—the most common form of dementia — the Woodvale grandmother has one guiding motto in life: “I’m not going to let Alzheimer’s disease get me.”
“I could not begin to tell you what it was like to see my mother, who was this wonderful woman who did art and craft, become one who has this dreadful disease and there is nothing you can do about it,” Lynch says.
“When my poor mum did pass away 19 months after entering a nursing home, I vowed that I would have to do something and find out more for me, because I didn’t want my family to go through what I had been through with my mother.”
Lynch’s story is increasingly common as Australia’s ageing population and our sedentary lifestyle fuel what Access Economics labels a nationwide epidemic, but thanks to her efforts and those of researchers, it may be possible to limit the time someone lives with dementia, if not cure it altogether.
If by 2020 we can delay the onset of Alzheimer’s by just five months, the population-wide savings to Australia are estimated at $1.3 billion, according to Access Economics.
The same delay will save $6.6 billion by 2040 and if we can hold off the disease by five years, the 2040 savings are estimated at an incredible $67.5 billion.
There is no cure, but a team of scientists led by Edith Cowan University Ageing and Alzheimer’s Foundation chair Professor Ralph Martins are combining brain scans with investigations into lifestyle factors to understand the future of our minds.
Martins says that while the statistics are concerning, researchers have come a long way in understanding the role lifestyle factors play in the risk of developing Alzheimer’s disease. At the heart of the disease is a toxic form of a protein called beta amyloid.
The protein forms a sticky deposit, known as plaque, in and around brain cells, killing off the cells and leading to dementia.
Martins says brain scans done as part of the ground-breaking Australian Imaging Biomarkers Lifestyle Study of Ageing (ABIL) study reveal almost one-third of Australians aged over 60 have enough beta amyloid in the brain to be considered to have preclinical Alzheimer’s disease.
Now in its tenth year, the AIBL study follows 1100 participants including people like Susan Lynch, who have no memory problems but may have lost family members to the disease, people experiencing mild cognitive impairment and participants in the early stages of Alzheimer’s.
The goal is to develop an early diagnosis technique for Alzheimer’s disease.
“What we have also found through the AIBL study is it takes a good 20 years from someone who starts accumulating amyloid to the point where it gets so high that they express the features of the disease, such as memory loss,” Martins says.
“We keep hearing about drug trials failing, constantly failing, and they are failing because it is too little too late.
“By the time people are clinically diagnosed, the brain is very severely damaged.
“We have a very significant window of time, if we can pick them early, where we can do something about it.”
Holding back the tide of dementia could be as simple as maintaining healthy lifestyle.
Martins says people who adhere to a Mediterranean type of diet, rich in fish, fruit and vegetables, less saturated fat and moderate alcohol intake, have been found to have a reduced risk of developing Alzheimer’s.
The AIBL study also shows that people who follow the diet have lower amyloid levels, whether they have a genetic risk factor or not.
It is this hope that fuels Lynch’s determination to spread awareness of the causes and concerns associated with Alzheimer’s and raise money for research in the field.
As an AIBL study participant, she and her husband regularly take a battery of memory, brain function, hearing and blood tests, and have volunteered to undergo complex scanning procedures such as positron emission tomography (PET), Magnetic Resonance Imaging (MRI), and eye scans to track any changes in their brains.
In conjunction with the scientific tests, Lynch says she tries her best to live a healthy lifestyle in the hope it will help stave off any accumulation of toxic beta amyloid in the brain.
“I try to socialise as much as I can, I walk and do a lot of gardening, and I keep very active with my grandkids,” she says.
“I think this research is absolutely vital because we need to know and there is a lot that we could be doing to help relieve the problem.”
ECU School of Medical and Health Sciences research fellow Dr Belinda Brown says there is good evidence that a combination of lifestyle factors, including sleep and exercise, also play their parts in the development of dementia.
Dr Brown and colleague Dr Stephanie Rainey-Smith found a link between the levels of beta amyloid in the brain and the time it takes patients to fall asleep.
“Sleep is very important,” Brown says.
“In this day and age people think they can burn the candle at both ends and do as much as they can, but people cannot function properly on small amounts of sleep.
“Given there is no treatment at the moment that intervenes with the pathology of the disease, it is so important that people do things earlier in life... to prevent or delay the onset.”
Apart from health and quality‑of‑life reasons for better and earlier detection of the disease, there is a pressing economic imperative for improved diagnosis and treatment.
One Access Economics report concluded dementia will become the third greatest source of health and residential aged care spending within two decades.
More than half of the residents in Government-subsidised aged care facilities have dementia, according to the Australian Institute of Health and Welfare, and the disease is the single biggest cause of disability in people aged 65 or older.
With dementia expected to reach epidemic proportions, training carers and professional health workers in the best way to manage people living with dementia, especially early onset dementia, is “vitally important”, says ECU School of Nursing and Midwifery associate dean Dr Elisabeth Jacob.
Jacob and colleague Dr Caroline Vafeas have developed education resources, including an interactive book and training videos, to be trialled in Bethanie Health Care and MercyCare facilities this year.
They warn that patients presenting with younger-onset dementia have different needs to their older counterparts, because they are often more active and need more meaningful activities and diversions as part of their care.
“It does not matter where you work, if you are in an aged care facility, if you are in an emergency department, if you are in hospital surgical wards, everywhere, then you are going to be coming across dementia patients,” Jacob says.
“If you are having this contact with dementia patients and you do not know how to cope with them and they are constantly being given sedation, that is not the correct way to care for these people,” Vafeas adds.
“It is not about medication, it is about holistic, person-centric care."
Music has long been said to sooth the savage beast, but it may also hold the key to addressing a pressing social issue for people living with dementia and their carers.
WA Academy of Performing Arts Italian language lecturer Dr Aureliana Di Rollo and ECU School of Arts and Humanities French studies coordinator Dr Celine Doucet hope to use music and arts to improve the quality of life of bilingual people experiencing neurodegeneration.
Di Rollo, who uses opera and music to teach Italian, says there is anecdotal evidence that bilingual dementia sufferers often lose their second language first and revert to their original language, which presents a big issue especially in migrant communities.
“The main problem is that they lose the ability to communicate with their family and with their carers,” Di Rollo says.
“So most of these people feel really cut off and cannot communicate even simple needs, as simple as being thirsty or sore or feeling sad.”
In a pilot project being launched in nursing homes this year, the pair aims to identify activities using music, language and the arts to see how these tools work with people living with dementia. “The challenge and difficulty and the fascination of this project is it is at the crossroads of many disciplines, and we want to use arts because arts works really well with health issues,” Di Rollo says.
“Research shows that every pleasurable activity increases cognitive skills, quality of life and helps people retrieve information that is lost somewhere in their memory.
“Language, whatever is the level of language skills, is very important for humans and if humans cannot communicate with the people around them then that is going to be a big issue.”
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