• Blank White

    Bulding global dementia expertise

    A pioneering Tasmanian learning centre is proof not just of growing concerns about the rate and impact of dementia but of a real thirst for information about it.

    The Wicking Dementia Research and Education Centre, based at the Faculty of Health at the University of Tasmania, is now the largest provider of dementia education in the world.

    It is also one of the most innovative: in 2013 it launched the world's first Massive Open Online Course (MOOC) devoted to dementia.

    Since then, more than 70,000 people from 155 countries have enrolled in the free 27-hour online Understanding Dementia course, which draws upon the expertise of neuroscientists, clinicians and dementia care professionals, and people with dementia and their carers.

    Within each unit, participants watch and listen to a series of short videos of experts discussing dementia, learn about authentic cases and do interactive projects.

    "We have a completion rate of 36 per cent, which is outstanding compared to the global MOOC average of between six and nine per cent," says Andrew Robinson, Professor of Aged Care Nursing and Co-Director of the Centre.

    The course is designed to be accessible and appealing to people from diverse backgrounds, including health professionals, residential facility support staff, health policymakers, social scientists, people in the early stages of the condition, their families and carers, and individuals with a general interest in dementia.

    They study three units: the first, on 'The Brain', considers basic concepts in nervous system anatomy and function, the pathology underlying dementia, and current and future research into varying presentations of dementia. The second, 'The Disease', explores the differences between typical ageing and dementia, risk factors for dementia, symptoms, diagnosis, and medical management. The third,'The Person', considers the insidious onset of dementia, living with dementia, the progression and stages of the condition, associated behavioural changes, and caring.

    Significantly, the course completion rate is the same if the student has a tertiary degree or certificate level education.

    Professor Robinson says the Wicking Trust took a "real leap of faith in us" in funding the creation of the Centre, which brought together "strange bedfellows": neuroscientists and social scientists.

    "That's a very unusual partnership, not just in Australia but globallly too," he said. "Historically those two groups would have very little to do with each, and might even have some antipathy at times, but they are a very creative and critical partnership when it comes to dementia."

    "If you don't understand the neuropathology of dementia, and how it progresses,  you're not going to understand what the wider care needs are. And you get inappropriate care in response to poor understanding of dementia, such as a care worker saying 'I told you not to do that, you're very naughty' when people with dementia are not 'compliant'."

    Professor Robinson remembers sitting at a dinner about five years ago with a neuroscientist who was dumbfounded that dementia was not widely accepted as a terminal condition.

    "In neuroscience, it was just a given and knowing that gave our social scientists the confidence to challenge the prevailing discourse," he said. "We were able to argue that so many people with dementia were having unnecessary burdensome interventions in the last three months of their lives rather than making sure they were getting the best quality of life."

    That revelation also had profound implications for the Centre's work after it conducted research that found 60 per cent of families and 50 per cent of aged care staff did not understand dementia. Just as interesting was the design of a new dementia knowledge assessment survey that allowed the Centre to compare knowledge between family, care workers, allied health specialists and doctors."

    "It showed you could have a family carer with very little decision-making power with a much better knowledge of dementia than the clinician who is responsible for decision-making.

    "If you don’t understand something, how can you provide appropriate care?" he said.

    In response, the Centre developed a Bachelor in Dementia Care, which like the MOOC course delivers learning in two inter-related streams: neuroscience and care and health services. Started in 2012, it's now in the top three of courses offered at the University of Tasmania and the only course of its type in Australia. Many of the nearly 2,000 students that are currently enrolled work in the aged care sector, helping to build workforce capacity and knowledge.

    Without the support of the Wicking Trust, Professor Robinson says, "none of that would have happened".

    Having the funds to set up a centre established an identity and a critical mass that enabled it to achieve early success and attract significant additional funding, including through the National Health and Medical Research Council for three streams of research – translational neuroscience, dementia trajectory and translational health services research – which then informs the education programs.

    "That's meant that we are really now a global player," he said.

    In 2016 the Centre will develop a new MOOC called ‘Preventing Dementia?’ and a series of short courses, based on the Understanding Dementia MOOC that can further promote a better understanding of dementia across the world.

    The JO & JR Wicking Trust has been providing support to what is now known as the Wicking Dementia Research and Education Centre since 2008.  The Trust’s current grant commitment to the Centre concludes in late 2017.

  • Blank White

    Money for jam

    Money for Jam is one of a number of projects being supported by Per Capita's Centre for Applied Policy in Positive Ageing (CAPPA) to build better retirement incomes for ageing Australians.

    The Money for Jam project to build better retirement incomes got its name from a woman whose neighbourhood gardening work meant she and her husband, both living on pensions, could afford more than just butter on their morning toast.

    The Adelaide woman, aged in her 50s, does gardening for people in their 80s and 90s who want to remain at home but struggle to look after their property.

    "Our parlance would be to call it a micro-enterprise, while she calls it a bit of pocket money, but it's enough to make a real difference," says David Hetherington, Executive Director of Melbourne-based independent think tank Per Capita.

    Money for Jam is one of a number of projects being supported by Per Capita's Centre for Applied Policy in Positive Ageing (CAPPA).

    With cornerstone funding from the Wicking Trust, CAPPA was set up last year in response to the issues identified in the Blueprint for an Ageing Australia report, published by Per Capita with former members of the Federal Government's advisory panel on ageing.

    "The whole thrust of the Blueprint was how do we shift attitudes to see ageing as an opportunity or asset rather than a burden," Mr Hetherington said.

    It followed the two-year Per Capita project, also funded by the Wicking Trust, on Longevity and Ageing: The sleeping giants of Australian public policy, which looked at ageing from a whole-of-society view, including housing, retirement income, urban design, and workforce participation.

    The Blueprint identified the "biggest pressure point", in terms of boosting retirement income, was for women, particularly those who do not have a lot of superannuation, may not have many assets, and are probably on a pension.

    The Money for Jam project is now being trialled in a local government area in Victoria to see how best to nurture and support small-scale business ventures among seniors, and older women in particular. It will be built from the ground up, on co-design principles, to see what best supports their endeavours: an actual meeting hub, a peer-to-peer support network, or something else.

    "We purposefully have not had a preconceived idea to ensure that the model we come up with is co-designed with the community and has the best prospect for being a sustainable model that we can then roll out elsewhere," he said.

    Another practical initiative is the Wise Young enterprise, which is seeking to bring together young and old people in business partnerships, and significantly has the backing of both National Seniors and the Foundation for Young Australians and their networks.

    Wise Young doesn't work on the assumption that young people will bring the ideas and old people the capital. That may be what happens but it could be the reverse, or a mix. The point is to encourage different generations to get together to get businesses up off the ground.

    Trialling and nurturing community ventures is not the usual task of a think tank, but the Wicking Trust funding has allowed Per Capita to step beyond its pure research origins and to become, as it puts it, a 'do tank', testing its research and policies on the ground, with a big focus on co-design.

    It's doing that at both the community level like with Money for Jam and Wise Young and also in advocating for systems change in larger, collaborative forums.

    One big systems focus is on the critical and thorny issue of affordable housing.

    Mr Hetherington is concerned that most advice on what incomes people on lower incomes will need as they head for retirement far underestimate their housing costs and issues.

    "None of them factor in housing," he said. "They assume you own your own home, when in fact the proportion of people moving into retirement with mortgage debt and who rent are significantly rising."

    CAPPA is currently researching a paper that aims to "start a new conversation" on what is a realistic retirement income for those who don't own their home outright and that looks also at issues like tenancy security and the likely rising demand for social housing.

    CAPPA  is also looking at the supply side, setting up a partnership with superannuation funds and state governments to come up with affordable housing development models that can provide sufficient scale to attract investment.

    Mr Hetherington makes no bones about the role of Wicking Trust in this work.

    " CAPPA wouldn't exist without them," he says. It's not just the welcome funding that Per Capita values from the Wicking Trust, but its knowledge of the issues, and the people and organisations, involved in ageing and aged care and capacity to bring them together.

    "They know the lay of the land so well that they can see how different organisations fit together," he said. As an example, the Money for Jam project was worked up through collaboration with fellow Wicking Trust grant-holders The Australian Centre for Social Innovation (TACSI) and the Council on the Ageing.

    "They don't just look at one grant partner and how they can get one project off the ground in a year," he said. "They look at how an organisation might, over a period of time, do something bigger and how that could be interwoven with others. They're very much about building their community."

  • Blank White

    Alzheimers: is prevention the Holy Grail?

    Could the Holy Grail in dementia research be to not to try to find a cure, but to find ways to prevent its onset?

    For Professor Craig Ritchie, the Holy Grail in dementia research is not to try to find a cure, but to find ways to significantly delay and ultimately prevent its onset.

    And he believes we are well on the way to prevention with a pioneering A$100 million European collaboration between academics and the pharmaceutical industry that he heads as Professor of the Psychiatry of Ageing at the University of Edinburgh.

    "If we can delay onset by five years, that is a massive step forward," Professor Ritchie told the Wicking Trust's inaugural Public Lecture, which followed its annual symposium to present the work of grant recipients and applicants.

    In fact, he said, a 5 year delay in the progressive condition could mean a 50 per cent reduction in incidence – not just alleviating much individual distress but freeing up huge resources amid massive unmet clinical need for people already living with dementia.

    That’s a vital objective for a condition that is currently costing $800 billion a year globally – equivalent, he said, to all the money spent by NASA on space exploration since its inception.

    Professor Ritchie leads the European Prevention of Alzheimer’s dementia (EPAD) Initiative, which promises to be a “game-changer” in better understanding the early aspects of Alzheimer’s diseases and to improve the chances of prevention.

    The five year collaborative research initiative, similar to a model that has worked for the development of an Ebola vaccine, was announced earlier this year after ongoing and expensive attempts to bring new drugs for Alzheimer’s disease to the market failed to deliver any breakthroughs.

    The scale of collaboration between the 36 private and public sector organisations involved mean it can speed up the whole research process, particularly around drug discovery. Using already established databases, it has accelerated the identification and referral of the study cohort and can rapidly test several treatment options within the same trial.

    "We got to the tipping point where we realised we would have to do things differently," Professor Ritchie said.

    Still consulting as a psychiatrist, he told the audience of his own frustration at clinicians being turned into “diagnosis factories” amid a massive push to try to diagnose early symptoms of dementia over recent years. It was mostly well-intended, he said, but ineffective when there wasn’t either the research evidence to back up diagnosis or treatment that could meaningfully change the course of illness.

    And it wasn't without consequence, swallowing up funding that could have been better used to improve quality of life for people with more severe dementias. His own clinic was forced to close a day centre for people with dementia to deal with growing referrals for diagnosis.


    Meanwhile people with dementia and their loved ones suffered the terrible false hope of every “cure breakthrough” that is breathlessly announced and undelivered. “Over decades, we’ve seen no new drugs, no new diagnostic tests. There have been billions, probably trillions of dollars of investment, but they have not translated into any net clinical benefit.”

    Professor Ritchie believes that a cure for dementia is an "unrealistic" expectation. However, he sees real hope in looking at prevention.


    Rather than rely on the individual efforts of particular researchers and pharmaceutical companies, EPAD will work with a constant cohort of 6,000 people to identify those who are at risk of dementia, to accelerate their treatment and offer a range of medical options.

    "We are making a 'prognosis', not a 'diagnosis'," Professor Ritchie said.

    EPAD's aim is to take a drug that works into phase three trials[1], but it will also look at lifestyle factors, both risks and resilience. "There's not going to be a silver bullet, it will be a combination of pharmacology, lifestyle and psychology," he said.

    Linking up with similar or related programs internationally will be key to its success. "It’s a global problem, the more data we get, the more accurate the model,” he said. EPAD already looks set to expand into the United States and Japan, and Professor Ritchie hopes Australia will join in, particularly given his close links with the local research community.

    The Scottish researcher has worked in Australia twice, including with Professor Colin Masters, Fellow of the Florey Institute of Neuroscience and Mental Health and a leader of the Australian Imaging Biomarkers and Lifestyle Study of Ageing (AIBL). Data from AIBL, which is also looking into dementia prevention, has gone into EPAD's initial modelling work.

    Professor Masters told the Wicking audience that EPAD is a "revolution in the field" and "world's best model" of collaborating to address the problem of dementia.

     “Everyone talks about prevention," he said. "This is walking the talk."

    For Professor Ritchie, the first milestone will be when he signs up the first participant to drug trials, expected to happen in April 2016. And he expects it to deliver early results. "I think 5 years from now we will have some substantial findings and possibly a new drug."

    Watch or listen to the full public lecture.

    [1]   The final stage before application for approval of an intervention that tests its effect on large groups of trial participants.

  • Blank White

    The heart of dementia research

    A group of 25 people from across Australia, some with dementia, others who are or have been carers, have been leading the way in improving dementia care – and changing the way research is done.

    Alzheimer's Australia's Consumer Dementia Research Network was established in 2010 to put consumers at the very centre of research into dementia, from high level agenda-setting through to reviewing the lessons learnt from individual projects.

    CEO Carol Bennett has no doubt that Alzheimer’s Australia’s commitment to putting consumer needs and consumer experience at the centre of research is a key reason  why the organisation was chosen to lead the new high-level National Institute for Dementia Research (NNIDR).

    "We've got a model that incorporates consumers in research in a very fundamental way," she said. "It's now part and parcel of dementia research to have our consumers involved in setting priorities as well as implementation, roll-out and review."

    That's the true innovation and benefit of the work of the Alzheimer's Australia's National Quality Dementia Care Initiative that was established in 2010 with the support of the Wicking Trust and Bupa Care Services.

    Its aim is to empower consumers – people diagnosed with dementia and their families and carers – to lead the way in efforts to translate dementia care evidence into better practice and to engage with dementia researchers to help shape what they investigate.

    "It's about driving reform in the experience of dementia by looking at what consumers want and need from the system," Ms Bennett said. "And it recognises the need to look beyond health and aged care to engagement with dementia across the broad range of the community, creating a dementia-friendly community and responsible and supportive systems."

    The first phase of the national Initiative saw the development of a wide range of training programs and resources to promote best-practice, evidence-based care and broad influence at a systems level.

    The Initiative also led a range of projects, from exploring best practice dementia design in gardens, at home, in the community and in residential care facilities through to investigating dementia-specific palliative care. All projects addressed areas that Alzheimer's Australia's consumer representatives identified as priority and resulted in new models of care, service improvement initiatives and systems improvements.

    A new suite of projects is now underway, again identified as priorities by the consumers. These include helping health professionals such as dentists and allied health professionals work better with people living with dementia, and supporting better understanding and management of medicines.

    Traditionally in research, says Ms Bennett, it has been the researchers, service providers and governments that have driven research directions.

    "That tends to set up systems that we in the system think will best meet the needs of the people, rather than starting with what the people identify as their needs and designing around them," she said.

    "We are showing that if you start from the consumer point of view, then you have got a greater chance of meeting that need and, particularly, of keeping people in their homes and communities and out of hospitals and other acute settings," she said.

    Consumer and community engagement has long been a focus for Ms Bennett, who was a former CEO of the Consumers Health Forum of Australia. She says there is still a way to go before the central role of consumers in setting priorities, co-designing solutions and participating in evaluation activity is standard practice in health and other services.

    She welcomes the momentum signalled by the National Health and Medical Research Council decision to appoint Alzheimer's Australia to establish and operate the new National Institute for Dementia Research to drive improvements in dementia prevention, diagnosis and treatment. It has the brief from the Federal Government to ‘change the game’ in dementia research in Australia.

    Alzheimer's Australia's capacity to position consumers as partners in driving the research agenda would not have happened without the support of the Wicking Trust for the National Quality Dementia Care Initiative, she said.

    "This support has enabled us to foster research priorities driven by the needs and priorities of consumers. It's about consumers saying that, from their experience, these are the areas that need more attention and focus and then directing resources toward that innovation."

    "Without the support of the Wicking Trust, the foundational and innovative work of the National Quality Dementia Care Initiative would not have happened and we would not be in such a strong position to see consumers influence and contribute to the translation of knowledge into innovative practice and solutions. ”

    The Wicking Trust has supported various initiatives of Alzheimer’s Australia (and its State-based affiliates) since 2005.  The Trust’s current grant commitment to Alzheimer’s Australia concludes in late 2016.

  • Number5

    Top 5 Estate Planning Mistakes

    Estate planning doesn’t have to be a complex process. In fact, it’s usually fairly straight forward. However, there are some common pitfalls you should avoid. 

    1. Not doing it

    The most common mistake is not creating an Estate Plan. Let's face it: our mortality is not something we like to dwell on. But by not planning for the inevitable you may end up exposing your loved ones to needless stress and financial hardship.

    If you die without a valid Will, known as dying intestate, your assets will be distributed according to a formula set by the State Government, not according to your wishes.

    Even if you have a Will, it will rarely cover the entirety of your estate. A full, up-to-date, legally valid Estate Plan is the only way to ensure your wealth is distributed how you want.

    2. Confusing a Will with an Estate Plan

    Whilst a Will covers how you would like your assets to be distributed, an Estate Plan includes a Will, and can address areas such as:

    • Jointly held property
    • Superannuation funds
    • Proceeds of life insurance policies
    • Power of attorney
    • Guardianship of children
    • Assets held in trust
    • Company assets

    3. Not updating your Estate Plan

    As your life changes; so should your Estate Plan. Divorce, remarriage, family and asset changes can all affect the distribution of your assets. We recommend your Estate Plan is reviewed whenever your circumstances change, or at least every three years.

    4. Choosing the wrong people

    During the Estate planning process you may consider nominating a close friend or family member as your Powers of Attorney or Executor. However there are some important points to consider:

    • Will they be driven by your wishes or by their emotions?
    • Can they shoulder the burden during their time of grief?
    • Do they have the skills to deal with the complexities of the process?

    Choosing a trustee company to be your Power of Attorney (financial) or Executor of your estate can avoid these problems.

    5. Forgetting tax planning

    Don't assume that all your assets can be transferred to beneficiaries without being subjected to capital gains tax. Many can, but there are notable exceptions. Expert Estate planning can help in avoiding tax pitfalls.