Dementia Research News Issue 22, October 2018

Director's update

In this edition of the National Health and Medical Research Council (NHMRC) National Institute for Dementia Research (NNIDR) newsletter, we're pleased to bring you news of our very own Young Tall Poppy for 2018, stories of impact marking this year's dementia awareness month, and an exciting new program which could revolutionise the way music therapy is delivered in dementia care settings. Other newsletter highlights include a profile of NHMRC Boosting Dementia Research Fellow Dr. Belinda Brown and her work in evaluating the impact of exercise on cognitive health, and upcoming events of interest.

As highlighted in our last edition, NNIDR has continued its pace and workload as the end of the year fast approaches. Our Indigenous working group continues to collate responses to the community input call into the development of the Aboriginal and Torres Strait Islander Dementia Research Roadmap. The Roadmap is expected to be launched in early 2019, as the academic year recommences. 

In breaking news, two new Boosting Dementia Research Initiative funding opportunities have now opened for applications on the NHMRC website. Priority Round 5 offers funding for implementing dementia risk reduction and prevention research, and Priority Round 6 will support partnerships of multidisciplinary, national teams to strengthen Australian dementia data sets and capabilities.

Our warmest congratulations go to NHMRC-ARC Dementia Research Development Fellow Dr. Genevieve Steiner (Western Sydney University) on being awarded the prestigious Young Tall Poppy Science Award for 2018. Dr. Steiner's dedication to community engagement and science communication has long been recognised by NNIDR - it's wonderful to see her passion and hard work acknowledged by the Australian science community. Well done, Genevieve! We're very proud of your achievements.

We're also pleased to bring you details of upcoming events and conferences in the dementia research sector.  We hope we'll see you all as the year comes to a close at these important meetings.

Finally, I'd like to welcome our incoming NNIDR staff - Alecia Slocombe, who has taken on the role of Events and Membership Officer, and Georgina Kaveney, who joins the team as Administration Officer. We're so pleased to have them join our office in their respective roles.

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Dementia awareness month

In honour of this year's dementia awareness month, NNIDR has teamed up with the National Health and Medical Research Council to share four stories of impact from the Boosting Dementia Research Initiative. We're pleased to be able to share these with you below.

Findings uncover exciting new intervention opportunities aimed at reducing the risk of dementia
Dr. Ashleigh Smith, University of South Australia, Alliance for Research in Exercise, Nutrition and Activity (ARENA)

By simply moving your body, your brain has the ability to change and re-organise its connections and potentially produce protective properties against many incurable diseases and conditions, including dementia.

In Australia there are more than 425,000 people living with dementia and this number is expected to increase to 1.1 million by 2056 1. At present, pharmaceutical options are ineffective at slowing dementia progression and are only moderately effective in improving symptoms. There is also a major (and growing) financial and social burden associated with this condition.

Considering the lack of successful pharmacological treatments, Dr. Ashleigh Smith is investigating alternative options for delaying dementia through lifestyle modifications. Dr. Ashleigh Smith is an early career neurophysiologist from the University of South Australia and her research is looking at optimising exercise levels, intensity and exercise environment for brain health in adults at risk of dementia.

According to Dr. Smith’s research, engaging older adults in frequent aerobic exercise is one of the strongest and most cost-effective strategies that can delay the onset and slow down the progression of dementia. However, advice from practitioners and uptake is limited by an incomplete understanding of how exercise positively influences brain health.

‘The overarching aim of my NHMRC-ARC Dementia Research Development Fellowship is to optimise exercise engagement for brain health in adults at risk of dementia’ explained Dr Smith.

Dr. Smith uses sensitive cognitive assessment tools, cutting edge non-invasive brain stimulation and recording techniques, as well as novel activity analytical approaches as part of her research arsenal. These methods have helped Dr. Smith discover that optimal cognitive performance is associated with daily activity patterns.

‘I have demonstrated that the best cognitive performance occurs in 50-80 year olds who spend 25 per cent of their day engaged in some form of physical activity’ said Dr Smith.

Together with NHMRC – ARC Dementia Research Development Fellow Dr. Mitchell Goldsworthy they have extended this work by showing that daily activity patterns also influence global brain networks, promoting cortical effective connectivity in older adults who do not have dementia.

‘My NHMRC fellowship has enabled me to make significant contributions to the field of cognitive neuroscience by providing evidence that daily activity patterns positively influence cognition and global brain networks’ said Dr Smith.

These findings may provide new insights into how activity patterns and physical activity protects the brain against cognitive impairment and dementia. Their next steps will be to test the efficacy of an activity modifying intervention based on the identified optimal activity patterns.

Dr. Smith hopes to see optimal interventions for brain health delivered in a way that is enjoyable, sustainable and feasible for individuals at risk of dementia. Few traditional methods of exercise engagement take these factors into account.

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How the internet can help prevent dementia
Professor Henry Brodaty, University of New South Wales, Centre for Health Brain Ageing (CHeBA)

Maintain Your Brain is a randomised controlled trial of multiple online interventions designed to target modifiable risk factors for Alzheimer's disease and dementia.

Affecting approximately 46 million people worldwide, dementia remains one of the greatest health challenges that we face as a global community.Available medicines have been successful in slowing the progression of symptoms, but not at stopping progression in its entirety. In the absence of a cure, the team at the Centre for Healthy Brain Ageing (CHeBA) have turned their attention to the prevention of dementia through their ground breaking ‘Maintain Your Brain’ (MYB) program. Lead Chief Investigator, Professor Henry Brodaty describes the program as a ‘world first’.

‘Maintain Your Brain is the largest trial ever to test whether an internet program over the course of three years can protect your brain functions,’ said Professor Brodaty.

The study will deliver an internet guide for approximately 8,000 participants, recruited through the 45 and Up Study at the Sax Institute, with tailored modules addressing each person’s individual risk factors. Modules include physical exercise, diet and nutrition, brain training and stress management. Significantly, MYB is the only study to date that directly addresses depression as a risk factor in the development of dementia.

Participants can log on from home in their own time and have direct access to support and assistance. The program utilises novel methods to tackle key risk factors in middle age, including using computer-based games for learning and brain activity. The internet delivery method also represents a big step in terms of accessibility; with a clear path to a national rollout should it prove successful.

‘The MYB team has worked hard to make the IT platform user-friendly yet sophisticated enough to deliver a program specific for each person’s risk factors. Participants will receive regular feedback to encourage continued participation and use state-of-the-art technology to monitor their cognitive performance over the three years of the trial,’ said Professor Brodaty.

Now at the two-year mark, the MYB research team has successfully developed the required infrastructure to deliver the program, selected participants for pilot studies, and refined each intervention module. Since MYB started recruiting in late June, over 11,000 people have registered as of August 2018. The first 2,300 participants have entered the trial; recruitment continues.

Funded under the Boosting Dementia Initiative, MYB represents a large-scale collaborative effort between CHeBA, UNSW Sydney, University of Sydney, University of Melbourne, Western Sydney University and Monash University. Dementia advocate Ita Buttrose is a patron of the Maintain Your Brain study.

1Global Impact of Dementia Report from Alzheimer’s Disease International.

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Music provides strong connections for people with dementia
Dr. Jeanette Tamplin, University of Melbourne

Dr. Tamplin is using therapeutic singing groups to support people living with dementia. Music is the glue that brings people together and it’s cementing and supporting existing relationships.

Dr. Jeanette Tamplin holds an NHRMC-ARC Dementia Research Development Fellowship at the University of Melbourne and works as a music therapist at the Royal Talbot Rehabilitation Centre - Austin Health and Epworth Hospital.

Dr. Tamplin is a registered music therapist and researcher specialising in neurorehabilitation for people neurological injuries or conditions (including traumatic brain injury, stroke, spinal cord injury, Parkinson's, and dementia). She has 20 years clinical experience working as a music therapist in neurorehabilitation and her research in this area focuses on the therapeutic effects of singing, speech and language rehabilitation, therapeutic songwriting, and coping and adjustment following traumatic injury or illness.

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New program helping older Australian navigate a car-free life
Dr. Theresa Scott, University of Queensland

The CarFreeMe program and resources aims to involve families and carers in the intervention process of driving cessation of people with dementia.

For many older Australians, and particularly those with dementia, relinquishing their driver’s licence can be a potentially overwhelming and demoralising event. Dr Theresa Scott, NHMRC-ARC Research Development Fellow at the University of Queensland, is working with a research team to develop CarFreeMe – a program that will provide practical and emotional support for those advised to stop driving.

The decision to hand over the car keys can prove difficult, leaving many feeling they have lost their independence. It also presents a challenge to primary carers, and GPs – often tasked with delivering the difficult news. Dr Scott has found that timing is everything when it comes to relinquishing a driver’s licence.

‘The transition to non-driving comes at a significant personal cost, including an increased risk of depression, anxiety, loneliness and isolation, identity loss, and grief. As symptoms of dementia progress, people lose insight into their driving ability and how it may affect others. Therefore, the ideal situation is for voluntary and gradual driving cessation,’ notes Dr Scott.

With trials currently underway, CarFreeMe is an evidence-based approach to supporting people living with dementia who are adjusting to life without driving. It is focused on the emotional and practical issues. The program has access to trained health professionals giving tailored solutions to individual needs and access to alternative forms of transport based on their location.

‘Changes to driving status not only impacts the individual but also their family members and support team. Often people are less upset with the process if they come to the conclusion themselves earlier rather than later.’

Dr Scott’s team are also trialling a telehealth resource to support general practitioners, primary carers and health professionals to manage this significant change. She hopes that this resource will be particularly helpful for general practitioners in rural and remote areas, where transport options are limited, and practitioners who have often developed a relationship with patients over a significant period.

Ultimately, the CarFreeMe program and resources aim to involve families and carers in the intervention process, resulting in better outcomes for people living with dementia.

‘This resource will help people realise they have a life outside of driving. It was developed with input from personal experiences and the need for life adjustments to remain active and connected to their community after driving cessation.'

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Our Young Tall Poppy: Dr. Genevieve Steiner

Congratulations go to NHMRC-ARC Dementia Research Development Fellow Dr. Genevieve Steiner at the University of Western Sydney - last month, Dr. Steiner was awarded the prestigious 2018 Young Tall Poppy Science Award - presented to Australia's leading young scientific researchers and communicators. 

The prestigious award, given by the Australian Institute of Policy and Science (AIPS) recognises excellence in early career research, as well as a passion and ability to communicate science to the wider community.

Dr. Steiner says she was thrilled to win a Young Tall Poppy Science Award, naming it a ‘highlight of her career.’

'Science communication and community engagement is one of the most fun, rewarding, and important aspects of my work as a cognitive neuroscientist.  It allows me to raise awareness of dementia – the greatest cause of disability in older Australians – and what we can do to reduce our risk,' says Dr. Steiner.

Dr. Steiner was nominated for the Young Tall Poppy Science Award by NNIDR Expert Advisory Panel Member Professor Kaarin Anstey, and mentored through the application process by NHMRC-ARC Dementia Fellow Dr. Ash Smith (2017 SA Tall Poppy Winner). It's fantastic to see NNIDR-affiliated scientists working together and supporting one another. Well done to all involved!

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Fellow profile: Belinda Brown

Dr. Belinda Brown

A dementia diagnosis, or the risk of dementia, raises many questions. Dr Belinda Brown, NHMRC-ARC Dementia Research Development Fellow at Murdoch University, is driven to find answers. She is especially interested in the role of lifestyle in maintaining a healthy ageing brain and preventing cognitive decline and dementia.

'As a research assistant I spent all my time working with people who were at risk of, or had, Alzheimer’s disease, and I could see they really needed answers. People were desperate to educate themselves,' Dr Brown explains. 

'It’s great to have some answers – to say to people ‘This is what you can do to modulate your own risks’ – to empower people.'

While exercise is recognised as beneficial for cognition, Dr Brown’s current research is confirming if high-intensity exercise is even more effective for ageing brains. The Intense Physical Activity and Cognition study involves 100 cognitively healthy men and women aged 60 to 80, randomly assigned to high-intensity and moderate-intensity exercise groups and a control group. The high-intensity and moderate-intensity groups do two supervised sessions a week on exercise bikes.

The research team is currently checking six-monthly assessments against initial baseline measurements. This includes cognition and memory tests, MRI scans, tests for Alzheimer’s disease blood-based bio-markers, and fitness tests.

'We’re looking for signs of improved cognitive function and the impact on specific areas of the brain. We’re aiming to release some results soon, and we’ll assess everyone again in another 12 months,' Dr Brown says.

Dr Brown is also leading a special interest group through the NHMRC National Institute for Dementia Research, which is evaluating the impact of exercise on cognitive health to develop specific exercise guidelines.

'The standard recommendations for exercise, around 30 minutes a day, are not specific to dementia. Currently there’s no cure for dementia, so it’s really important to get the word out about exercise as a cost-effective prevention strategy.'

The group of researchers, policymakers, clinicians and consumers first came together at this year’s Australia Dementia Forum to discuss exercise as a way of delaying the onset of dementia.

'We need to look at higher intensity exercise – interval training, progressive resistance training. Evidence needs to be widely distributed and translated, so that GPs will prescribe exercise and ensure referrals to exercise physiologists and physiotherapists.

'Consumers tell us that programs run by professionals are important to keep with an exercise program. So getting the word out is important, not only for maintaining cognitive function but as a preventative measure and to enhance the way the brain is working at the moment.

'We want to get that information back out into the community – we want our research to make a difference.'

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'What is the quality of care for Australian aged care residents?' asks the Cognitive Decline Partnership Centre

Last month, the Cognitive Decline Partnership Centre (CDPC), along with Brightwater, Helping Hand, HammondCare and Dementia Australia released the Supported decision-making in aged care guideline for aged care providers in Australia.

The new policy guideline provides aged care organisations with practical tools to assist in reframing current policies relating to choice and decision-making against the new standards.

An action plan for policy development for aged care organisations, including a self-assessment tool to assess their current policies, is included in the policy guideline, as well as an interactive case study and a model policy framework to reframe current policies.

The development of this guideline is part of a larger project investigating supported decision-making in the context of dementia funded through the Cognitive Decline Partnership Centre at the University of Sydney.

You can view the policy guideline on the University of Sydney website here.

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How music could revolutionise dementia care

The University of Melbourne has launched its Music as Medicine campaign, hoping to put the results of a global music therapy study into practice in residential aged care facilities around the country, to treat depression in people living with dementia.

According to Dementia Australia, depressive symptoms occur in approximately 40 to 50 percent of people living with Alzheimer's disease.

The campaign is calling for every aged care facility in Australia to have an Australian Music Therapy Association (AMTA) Registered Music Therapist on staff. Lead resesarcher of the associated global study, Felicity Baker, recipient of an NHMRC Implementation grant, says this is an area of research that's being strengthened over time.

'Depression keeps coming up. It doesn’t matter what population we’re working with, it’s the thing that music is having an impact on.'

People with dementia, their carers, researchers and health service providers supportive of this campaign are encouraged to visit the AMTA website to find out more.

To find out more about Professor Baker's global study, click here.

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Upcoming events

11th International Conference on Frontotemporal Dementias | 14 November | Sydney

The International Conference on Frontotemporal Dementias is being held in the southern hemisphere for the first time, demonstrating the global nature of research on frontotemporal dementia and related conditions.

Visit the ICFTD Conference website to find out more and register your attendance.

Emerging Researchers in Ageing 2018 Conference | 19-20 November | Melbourne

The ERA 2018 conference is being hosted by the Monash University Dementia, Ageing and Neurodegeneration Network, and chaired by Dr Sharna Jamadar.

This is the only national conference in Australia focusing on the work of higher degree research students undertaking research in ageing across a range of disciplines. ERA 2018 offers a unique opportunity for higher degree research students to come together to share their research.

Visit the ERA Conference website to learn more.

Australian Association of Gerontology Conference 2018 | 22-26 November | Melbourne

The Australian Association of Gerontology (AAG) is hosting its 51st Annual Conference in Melbourne from Wednesday 21 to Friday 23 November 2018 with pre-conference Workshops held on Tuesday 20 November 2018. The 2018 AAG Conference in Melbourne will offer a fantastic opportunity to shed light on the theme of ‘Advancing not Retiring’.

Visit the AAG Conference website to find out more.

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Useful references

Causes of Death Report 2017
Australian Bureau of Statistics
Causes of Death, Australia focuses on the causes of the 160,909 deaths registered in 2017. This issue provides several articles on particular causes or topics (detailed below), as well as comprehensive data cubes covering all causes of death by key demographics. 
Click here to read the Report

Highlights from the AAIC
The Alzheimer's Association International Conference was held in Chicago in July. The Alzheimer's Association has released conference highlights, including a video reel, media releases and plenary speaker profiles.
Catch up on the highlights from AAIC here.

Patients' roles and rights in research
The British Medical Journal
Editorial: full partnership with patients is essential to any modern research enterprise
Click here to read the editorial in full.

Interventions to support carers of people with dementia
Productivity Commission
This review considers what works to support carers of older people with dementia to prevent or delay entry into residential aged care. It adopts a rigorous and systematic approach to identify and appraise the evidence, aiming to inform dementia policy.
Click here to read the Productivity Commission's full report.

33rd Conference of Alzheimer's Disease International (ADI) Presentations
ADI has released a selection of presentations from the 33rd Conference held in Chicago in July.
Click here to view presentations from the 33rd Conference of ADI

JPND Mapping Exercise: New database and report now published
The Joint Programme for Neurodegenerative Research has release the online database and report captured by the JPND Mapping Exercise. The JPND Research Database is a product of the Research Mapping exercises conducted by JPND in 2016 and 2011. It contains data on the scope and spread of research related to neurodegenerative disease in 27 member countries.
Click here to read the JPND Mapping Exercise 2016 Report
Click here to access the JPND Research Database

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Call for papers

Have you published a research paper on dementia lately? Have you just had a paper accepted for publication? Let us know and we’ll include a link to it in our next issue! Simply send a link to your paper by email

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Share your story 

If you have a story to share on dementia, whether its research or personal experience, please contact the NNIDR Communications Officer, Bojana Kos by email or phone 02 6217 9172. Your story may be published in the next newsletter, or used as vignettes in Institute-related communication materials, or created into a feature story and pitched to the media.

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