Dementia is the second leading cause of death in Australia, the single greatest cause of disability in older Australians and has been labelled a National Health Priority. Across the globe, researchers are examining causes, prevention and are working to improve medical treatments and dementia care in a bid to defeat the debilitating disease, writes Karen Keast.
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If you have young children, the good news is that your offspring are likely to live to a ripe old age. Unfortunately, the bad news is that unless there’s a medical breakthrough, it’s estimated that about half of all female children born today will develop dementia, and the males aren’t too far behind.
While governments, organisations and pharmaceutical companies are continuing to pour billions of dollars into
dementia research world-wide, there remains no cure for the age-related condition and no effective dementia treatment that slows or modifies dementia.
Dementia research
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Australia is now home to a growing area of dementia research.
Researchers are examining causes of dementia, such as genetics as well as the role of the two main brain changes, beta-amyloid plaques and tau tangles, in the most common form of dementia, Alzheimer’s disease.
With no single test that can accurately diagnose dementia, Australian researchers are also working to improve diagnostic measures that lead to earlier diagnosis, with research into biomarker analysis, neuroimaging, and neuropsychological testing.
Dementia research is also focusing on developing dementia treatments, improving risk reduction and prevention, and in boosting dementia care.
The Federal Government has increased its investment in dementia, announcing a $200 million injection for dementia research spanning five years, in its 2014-15 budget.
That funding has established the National Health and Medical Research Council’s (NHMRC)
National Institute of Dementia Research (The Dementia Institute), which is working to bring together, prioritise and boost the nation’s dementia research.
The Dementia Institute, run by
Alzheimer’s Australia in conjunction with the NHMRC, comprises the
Dementia Collaborative Research Centres, the
Cognitive Decline Partnership Centre, and the
Clem Jones Centre for Ageing Dementia Research.
As part of the world-wide effort to expand research into dementia, Alzheimer’s Australia’s Dementia Research Foundation is working to fund early career researchers in the field.
The
Australian Imaging, Biomarkers and Lifestyle Flagship Study of Ageing (AIBL) is a research collaboration which is examining biomarkers, cognitive characteristics, health and lifestyle factors of dementia. It aims to improve the diagnosis of Alzheimer’s disease and is working to uncover treatments and lifestyle factors that can prevent or delay dementia.
Another pioneering dementia research organisation is the
Wicking Dementia Research and Education Centre at the University of Tasmania. The integrated dementia care centre combines neurosciences and social sciences research and education in the areas of dementia causes, prevention and quality of care.
James Vickers, centre co-director and a Professor of Pathology, says while Australia doesn’t receive as much funding in dementia research as many countries, the nation is playing a lead role when it comes to innovative, major projects in dementia research.
Professor Vickers, whose research has focused on maintaining and improving brain plasticity, says one of the centre’s three main areas of research is examining dementia causes, including the sequence of cellular changes that lead to Alzheimer’s disease.
“We’ve studied the beta-amyloid plaques inside the brain which is one of the key pathological changes in Alzheimer’s disease - they are causing a small amount of damage to the processes of nerve cells, the axons, but over time it’s the reaction of those nerve cells to damage that probably drives the actual disease itself,” he says.
“If you’re able to freeze this disease at the early stage when they’ve just got plaques in their brain, they are not going to get much of a deficit.
“We’re trying to figure out how to either get rid of the plaques, or how to stop them causing damage to the nerve cells, and also if you can protect the nerve cells in some way from that damage.”
The centre is also working in the field of dementia prevention in a bid to improve people’s resistance to brain disease. A world-first, long term cohort study of 500 people, titled the Tasmanian Healthy Brain Project, is investigating whether tertiary education later in life can reduce cognitive decline and either delay the onset or decrease the risk of developing dementia.
Professor Vickers says while the study is another four or five years away from completion, the early results are positive.
“What we’ve found so far is that people coming back into higher education are getting a boost in cognitive reserve - this is a construct that relates to your resistance to developing dementia,” he says.
“In particular, getting a boost in their linguistic ability, like comprehension, grammar, sentence construction, which we also know from retrospective studies, that’s also potentially going to protect the brain as you get older.
“Already we’re seeing improvements in some cognitive measures, not all cognitive measures, but in a number of them that are probably linked to relative resistance to dementia.
“We also think that there’s possibly an interaction with gene variations that make you more susceptible to pathology and also other genes that might help with brain plasticity, so combinations of those particular genetic variations may well play out in that equation as well.”
While the population is rapidly ageing and the challenges to support people in the health system is mounting, Australian researchers are achieving some advancements in dementia research.
Professor Vickers says the AIBL study is making vital headway into neuroimaging.
“Now you’ve got new imaging markers that you can use with PET scans to basically try and determine when the early pathology starts inside the brain,” he says.
“This is very much at the forefront because we think that a condition like Alzheimer’s disease may start as early as 10, 15 or even 20 years before you have overt functional deterioration and so maybe some of these diagnostic tools will help us determine those who are on the trajectory towards dementia.
“The AIBL study is trying to identify people who are at greatest risk of developing dementia before they get dementia. It’s the idea that these are probably the people for new drug interventions.
“The field probably recognises this now, that with drug trials that target people with established dementia, that it’s going to be very hard to change the trajectory of deterioration.
“We really need to get people before they’ve got too many overt symptoms and to try to modify that trajectory and that’s where this AIBL study is directed at.”
Dementia treatment
Dementia treatments include cholinergic treatments for people with mild to moderate Alzheimer’s disease and Memantine for people with moderate to severe Alzheimer’s disease.
Professor Vickers says while the treatments may reduce symptoms and improve the quality of life in some people living with dementia, they fail to halt the underlying progression of the disease.
“If you do get a diagnosis, a lot of people will be trialled on drugs that provide symptomatic relief and these ones target neurotransmitters like acetylcholine, so they try to boost the levels of acetylcholine inside the brain and there’s a number of options out there, a number of different drugs that basically do that same thing.
“That works for some people quite well but for many people they don’t respond and even if it does work, it works for a short period of time in the early stages of the disease.
“They don’t do anything about the disease progressing really but they might mask some of the symptoms. At the moment Alzheimer’s disease is fundamentally untreatable.”
Other pharmacological and non-pharmacological treatments are available for the accompanying behavioural and psychological symptoms of dementia, such as depression, anxiety, sleeplessness and aggressive behaviour.
Professor Vickers says researchers are striving to discover new drugs that will transform the way we treat dementia.
“We would hope that someone would develop new medical treatments, drugs that will slow the disease or manage the symptoms in some way more effectively but it hasn’t been as successful to date,” he says.
“The question is - will it be in our lifetime? I’m not so sure. Coming up with a really smart drug that attacks the disease process and leaves the rest of the brain alone is going to be a really hard thing to do.
“For the company or the research group that pulls it off, that drug is going to be worth billions and billions of dollars but at the moment we are a long way from having that.”
Dementia care
The first
Australian clinical guidelines and principles of care for people with dementia were recently released.
The evidence-based guidelines feature 109 recommendations and are designed to help inform a nationally coordinated response to dementia care.
Targeted at health practitioners, aged care workers and people caring for or living with dementia, the guidelines are designed to improve the nation’s provision of dementia care.
The guidelines come as Australian researchers continue to investigate measures that will boost the care of people with dementia in the community, in the hospital setting and in residential aged care.
The Wicking Dementia Research and Education Centre is working to improve the way residential aged care facilities care for people with dementia while endeavouring to recruit and retain nurses and other workers into the fast growing health care sector.
The Wicking Teaching Aged Care Facilities Program, led by centre co-director Professor Andrew Robinson, is creating teaching aged care facilities through partnerships between universities and aged care providers, which are designed to lift the quality of dementia care. In another project, the centre is also investigating the benefits of on-site, rather than an on-call, GPs for aged care providers.
With education pivotal in providing effective dementia care, the centre is improving education for health professionals, carers and the wider community. In 2013, it launched the world’s first free Massive Open Online Course (MOOC) on dementia,
Understanding Dementia, and it also offers a
Bachelor of Dementia Care.
There are models of care that are also leading the way in enhancing the quality of life for people living with dementia in residential aged care facilities, such as Amsterdam’s renowned village-styled dementia facility
De Hogeweyk.
While some facilities are delivering innovative models of care, Professor Vickers says more evidence is needed to determine best practice in dementia care provision.
“At the moment it’s pretty anecdotal. That said, it’s not actually rocket science, it’s trying to provide an environment that you would feel comfortable living in at any time,” he says.
“It’s unusual for most of us to go from living in our home or apartment to something that looks like a motel, with a whole bunch of other people and staff who come and go, and with regularised time tables where, for example, everyone is eating at the same time. That isn’t what we would usually describe as normal life.
“It’s really trying to manage that environment. We want people living with dementia to have as high a quality of life as possible.”
About dementia:
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What is it? Dementia is a collection of symptoms of a large group of illnesses which cause a progressive decline in a person’s neurological functioning, comprising loss of memory, intellect, rationality, social skills and physical functioning. There are many types of dementia, such as Alzheimer’s disease, vascular dementia, frontotemporal dementia, Lewy Body disease, Korsakoff’s and Wernicke/Korsakoff syndromes (alcohol-related dementia), and HIV associated dementia. Dementia is a disease symptom and not a normal part of ageing.
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Who has it? Anyone can develop dementia but it is more common after the age of 65. In this age group, almost one in 10 people have dementia. Three in 10 people over the age of 85 have dementia. About 25,100 people in Australia have younger onset dementia, which is a diagnosis under the age of 65 including people as young as 30.
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How many people have it? More than 353,800 Australians are now living with dementia. This number is expected to increase to 400,000 in less than five years. Without a medical breakthrough, that figure is expected to rise to almost 900,000 by 2050. World-wide, more than 46.8 million people have dementia and that number is expected to rise to 131.5 million by 2050.
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What causes dementia? The main risk factor is age. Other risks include low education early in life, genetics, obesity, diabetes, hypertension, smoking, depression and low physical activity.
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What are the dementia symptoms? Common symptoms may include increasing memory loss, confusion, apathy and the inability to perform everyday tasks.
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How do I find out more? Visit Alzheimer’s Australia or call the National Dementia Helpline on 1800 100 500. More resources are available at the DCRC.