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The landscape for dementia policy, research, diagnosis and treatment in Australia is facing significant change in the near future, not least with the possible arrival of a disease modification therapy that leading dementia researcher Professor Colin Masters AO believes we are not ready for.

Professor Masters, a world leader in research into Alzheimer's disease and viral infections of the brain, highlighted the potential breakthrough of a drug to treat early-stage Alzheimer’s at the recent Wicking Trust Symposium.

He predicted the arrival of a disease modifying therapy, perhaps in the next 12 months, would “change the whole face of the way we look at Alzheimer’s and dementia,” reveal gaps in Australian medical capacity, and jump-start a catchup in research funding that currently still sees funding for dementia research outstripped five times by that for cancer.

Professor Masters, a member of the Wicking Strategic Review Panel, was speaking during a panel session on evolving research and policy approaches and arrangements in dementia.

The panel also featured Jo Mond, Assistant Secretary of the Dementia and Supported Ageing Branch at the Federal Department of Health, and Janice Besch, Director of the NHMRC National Institute for Dementia Research (NNIDR).

It was moderated by Ian Hardy AM, also a member of the Wicking Strategic Review Panel and recently retired as CEO of Helping Hand Aged Care in South Australia.

Ms Mond told the symposium the Royal Commission into Aged Care Quality and Safety has kept her branch “very busy” this year and would continue to do so next year, with its recent interim report “suggesting reform must be both systemic and transformational”.

“It can’t be piecemeal; it can’t be reactive.  That’s a massive challenge for us all, and something that the government is giving a lot of thought to now, to make sure it is exactly that,” she said as part of an update on the Federal Government’s research and policy direction in dementia.

Professor Masters, laureate professor of pathology at the University of Melbourne, told the session it was possible that United States biotechnology company Biogen may soon gain approval from the Food and Drug Authority in the US for its drug aducanumab to treat early-stage Alzheimer’s disease.

“Is Australia prepared for this?” he asked. “The answer is no,” he said.

He cited concerns published in a recent study by RAND Australia, which was sponsored by Biogen, that a lack of medical specialists in Australia would mean average wait times of about 10 months to complete the diagnostic and treatment phases in 2022, with wait lists for treatment persisting until 2033.

 “That’s a big challenge,” he said.

Biogen’s announcement that it is seeking approval for the drug has been big news, raising hopes in research and Alzheimer’s disease circles but also surprise and scepticism as the company had earlier discontinued work after disappointing trial results.

The treatment specifically targets and clears amyloid which Professor Masters and other researchers have long maintained is the toxic peptide driving Alzheimer’s disease.

The RAND study, which has also been conducted with similar results in other countries, concluded that Australia’s health care system “has limited capacity to rapidly move a future treatment for Alzheimer's disease from approval into wide clinical use”. That could leave “thousands of older people without access to transformative care if such a breakthrough occurs”, the researchers said.

RAND said the most pressing problem would be the availability of medical specialists to evaluate and diagnose patients who may have early signs of Alzheimer's disease. Other capacity shortcomings may include the availability of specialised diagnostic scanners and infusion centres to deliver treatments to people with early-stage disease, with rural and regional areas particularly lacking capacity to respond quickly, it said.

Responding to questions from the audience, Professor Masters also predicted that “comprehensive dementia centres” would do for dementia what centres like the Peter MacCallum Cancer Centre have done in cancer, bringing together dementia research, education and treatment in a “one stop shop”.

“It’s going to work, we’re going to do it, it’s on the agenda right now,” he said.

The symposium also heard from Ms Besch about the “time of transition” underway at the NNIDR, which had now allocated all funds from the five-year $200 million Boosting Dementia Research Initiative that was launched in 2014.

With NNIDR funding confirmed to June 2020, her role over the next 6-12 months will include considering how best such a national collaborative research effort on dementia can be structured in future, including whether it will sit in government or at a university.

Big issues on the horizon were finding better ways to translate knowledge into clinical care and practice, and to retain and build research capacity.  Achieving this could involve more formal partnerships between the private sector, philanthropy and government as has been done in Europe, the US and particularly well in Singapore since it began its research funding system, she said.

“We want to tap into those internationally strategic funds, and locally build a services sector that promotes better, smarter ways to do things and better outcomes for people living with dementia and their families and carers,” she said.

Ms Mond agreed that, as the Boosting Dementia Research Initiative wraps up, it is important not to lose the investment the sector has made in research fellows, and the boost the initiative has given to the research environment for dementia.

What will follow is the $185 million medical research package in the 10-year Ageing, Aged Care and Dementia Mission, funded through the Medical Research Future Fund (MRFF). The Mission was announced during the 2019 election campaign and now has an expert advisory panel appointed and advising on priorities, she said.

Ms Mond told the symposium her branch had campaigned strongly to make sure the Mission included ageing, not just dementia and aged care.

Research was likely to focus on improving the timeliness of dementia diagnosis, early post diagnostic treatments, prevention and risk reduction, quality of life, innovative care models including how technologies can improve health outcomes, and compressing the period of intense morbidity in later years, she said.

The Federal Government is also in the early stages of setting up the new Aged Care Centre for Growth and Translational Research to examine new ways to deliver care for older people, and training and education for aged care providers.

At the policy level, Ms Mond said she was looking forward to addressing some of the gaps that had been identified, particularly around accountability, in the National Framework for Action on Dementia 2015-2019, as the Western Australian Government leads its review.

“I’m very excited about the opportunity presented (in that work) to shape a future dementia strategy that has stronger accountability, and includes measures, (where) we decide what outcomes we want to achieve and how we work across governments and sectors to do that,” she said.

“I think that is something people are recognising is missing. The current framework, while a useful guiding strategy for governments and industry and researchers, has lacked monitoring mechanisms and good measurement of outcomes.”

The 90-minute panel discussion ranged across many areas of dementia research and policy, including how to ensure the balance is right in research for diagnosis and treatment versus management and care, growing needs for better palliative care, the role of the social determinants of health, and treatment and care for vulnerable communities.

One focus was on better knowledge translation, including advice from Ms Besch to make sure end users are closely involved in the development of any intervention.

“Once you have defined a problem, once you have a program mobilised, if that program is to deliver results you’d better make sure the people implementing it have the power over developing the solution,” she said. “If those people aren’t actively involved in the process of getting that solution to its full scope and development, it’s not going to work.”

With a nod to her past work in digital transformation, Ms Mond urged bringing together all key stakeholders – people with dementia, their carers, and providers and practitioners – but also giving space to not just solve but also define a problem, to leave “room for discovery”.

“There are always more problems than the one you might bring to the table to start with,” she said. “

Ms Mond also talked about her efforts to strengthen the human-centred approach in the way the branch develops policy, including having policy officers go out into clinics and elsewhere to do “observational work” to get a better understanding of first-hand experience.

“We’re going to be drawing on that, and have held across the country a number of policy workshops that are shaping our views going forward to review the framework and also how to address the Royal Commission findings,” she said.

“That’s something quite new for the Department of Health and we’re actually getting interest from other departments who want to partner with us, to take a more on the ground approach,” she said.

Philanthropy has the ability to make real and measurable differences to causes and people. A collective effort can make real and lasting impact.

A stunning example of this is demonstrated through the legacy of John and Janet Wicking. After a vibrant lifetime of partnership and generosity, they left behind the J.O. & J.R. Wicking Trust. It was established in 2002 and is now one of Australia’s most significant charitable trusts distributing around $4 million annually. Through its major grants program the Trust aims to achieve systemic change in the areas of ageing and Alzheimer's disease, and also enjoys well-established partnerships with Vision Australia and the O'Brien Foundation (formerly the Microsurgery Foundation).

The Wicking Symposium is a part of the Trust’s contribution to actively supporting the collaborative search for answers to the issues and challenges facing ageing Australians and those with Alzheimer’s disease to age well and die well. The Wicking Trust’s approach to achieving this change has evolved over time and continues to evolve.

As Australia’s leading trustee company, Equity Trustees is proud to manage the Wicking Trust and promote the work it supports.

Equity Trustees is a specialist in philanthropy as trustee to more than 250 individual philanthropic families/clients on their structured giving, and trusted advisor and manager of more than 650 charitable trusts and foundations, granting more than $80 million annually to the for-purpose sector.

Image from left:  Ian Hardy AM,  Jo Mond,  Janice Besch and Prof Colin Masters AO.

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