Welcome to the new-look NNIDR Newsletter - Dementia Research News. In this edition, we're pleased to bring you news of our successful Australian Dementia Forum including our Awardees for 2018, the largest single investment in research through the Boosting Dementia Research Initiative, and important progress made in the effort to facilitate greater consumer involvement in research. Other newsletter highlights include: a response from NNIDR fellows to research from the UK on the role of high-intensity exercise in treating dementia, and the release of the Consumer Involvement in Research Communique from last year's Dementia Care Forum in Melbourne.
It's been a busy few months for the Institute, with our Australian Dementia Forum, the inaugural Indigenous Dementia Forum Roundtables, and the Boosting Dementia Research Initiative Early Outcomes Report released at the International Dementia Conference in Sydney, all taking place in June. The annoucement of the single largest investment of the Initiative, the Australian Dementia Network (ADNeT), followed on 2 July.
ADNeT will establish an integrated network of dementia researchers, clinicians and health service providers to enable ongoing, high-quality translation of research into clinical care for Australians living with cognitive impairment and dementia. ADNeT will enable fast recruitment of trial-ready research participants, and will support participants through their involvement in clinical trials.
This flurry of activity will continue as we approach the end of the year, as the Indigenous Dementia Working Group turns its efforts in developing the Strategic Roadmap for Indigenous Dementia Research to community consultations. The launch of this Roadmap is expected in November, with details to be released shortly.
Finally, my congratulations go to our ADF2018 Awardees: Amy Shepherd (Best Oral Presentation), Olivia Brancatisano (Best Rapid Fire Presentation), Cath Bateman and Annaleise Blair (Best Poster or Presentation describing methods for Public Involvement in Research), and Isabelle Burke (Best Presentation by a Person with Dementia, or Carer), as well as our Best Poster Awardees Dr Suzanne Dyer (Care), Dr Michelle Callisaya (Living with Dementia), Dr Angela d'Rozario (Intervention and Treatment), Dr Nawaf Yassi (Assessment and Diagnosis) and Dr Stephanie Ward (Prevention). Thank you for sharing your insightful and informative presentations with the ADF2018 delegation.
Thanks also go to Professor Glenda Halliday and the ADF2018 Commitee, for their tireless efforts in coordinating this year's program. Planning is underway for next year's Forum in Hobart, with a call for abstracts and registration opening expected by the end of the year.
We hope you enjoy the Institute's new-look newsletter - Dementia Research News - and as always, welcome suggestions for new content.
Australian Dementia Network Announcement
Minister for Aged Care, the Hon. Ken Wyatt MP announced $18 million to establish the Australian Dementia Network (ADNeT) - the largest single research program to be funded to date through the Government's Boosting Dementia Research Initiative on 2 July, in Melbourne.
“Accelerating innovation in the prevention, diagnosis, treatment and management of dementia is a global priority and research effort that Australia is proud to be a part of,” Federal Aged Care Minister Ken Wyatt said.
ADNeT will bring dementia researchers, clinicians, health service providers and industry, together with people living with dementia to deliver the ADNeT Registry and research program, enabling high-quality research and clinical care.
ADNet is set to become the single largest investment in dementia research in Australia, with additional pledges of support from philanthropic organisations the JO and JR Wicking Trust, and the Yulgilbar Foundation. These Foundations join industry, universities, research institutes and state governments to more than double the Federal Government’s investment.
Through ADNeT, Australia joins the international push to utilise large-scale national dementia registries to accelerate dementia research.
- Track, benchmark and report on the quality of clinical care of those with dementia, supporting the program’s research participants through the life course and producing valuable data sets that will improve understanding of what causes dementia, how it progresses, risks, opportunities for new treatments, and quality care.
- Establish a national network of memory clinics to better assess cognitive disorders and improve specialist access for all Australians.
- Prepare willing Australians for participation in clinical trials and other research programs, by providing them with state of the art diagnosis and tracking their disease trajectory over time.
- Ensure Australian and international data area able to be shared, providing unprecedented research access to large scale data sets that can inform prevention, treatment and care.
“As Minister for Aged Care I am vitally concerned with the quality of healthcare received by Australians. As such, I warmly welcome ADNet’s focus on bringing evidence-based strategies into the community as quickly as possible to improve the lives of people with, and at risk of, dementia,” Minister Wyatt said.
This funding is part of a $200 million package for boosting dementia research announced in the 2014-15 budget.
Since 2015, NHMRC’s National Institute for Dementia Research (NNIDR) has been targeting, coordinating and translating the strategic expansion of dementia research in Australia. By collaborating with researchers; engaging those living with dementia in research efforts and connecting with health professionals and policy makers, the NNIDR is committed to achieving the World Dementia Council’s international target – identifying a disease-modifying therapy for dementia by 2025.
Australian Dementia Forum 2018
The Australian Dementia Forum (ADF2018) was held in Sydney on 4-5 June.
The third Annual NNIDR Australian Dementia Forum (ADF2018) was held in Sydney on 4-5 June. This year’s theme was ‘Cooperation, Collaboration and International Connections’.
Building on last year’s Forum success, the ADF2018 aimed to encourage collaboration and capacity building across Australia’s network of dementia researchers, and greater connection with international research teams, similarly dedicated to tackling the challenge of dementia.
Researchers submitted over 179 abstracts and of these 45 were selected for presentation at ADF2018, with a further 93 poster presentations across three poster sessions. Three international keynote speakers participated in ADF2018, with a further keynote address delivered by NHMRC Boosting Dementia Research Leadership Fellow, Dr Carol Dobson-Stone.
Our international keynotes, Dr Rachel Whitmer from the University of California Davis, Simon Denegri OBE from the National Institute for Health Research (UK) and Professor Joseph Gaugler from the University of Minnesota, each shared their insights across risk reduction, care, and living with dementia.
This year the NNIDR provided travel scholarships for consumers involved in research to co-present their work with researchers, and for international early career researchers to develop meaningful networking connections with their Australian counterparts. These scholarships allowed our delegates to hear from consumers, carers and advocates, like John Quinn and Glenys Petrie, and Isabelle Burke, whose unique perspectives and impact resonated with delegates, and provided a complete picture of the field of dementia research.
The ADF2018 also included the Public Involvement in Research Workshop facilitated by Anne McKenzie AM from the University of Western Australia, and Simon Denegri. The workshop provided a unique opportunity for consumers and researchers to consider ways in which to further encourage consumer involvement in dementia research.
Congratulations to the many people involved in planning the ADF2018 – it was a great event. Planning is currently underway for the fourth Australian Dementia Forum in 2019. Details to be announced shortly – stay tuned to find out what we have planned in Hobart next year.
Australian Dementia Forum 2018 Awardees
Best Oral Presentation
Amy Shepherd, The Florey Institute
Comprehensive touchscreen cognitive characterisation of APP/PS1 mouse model of Alzheimer’s disease reveals subtle and progressive impairments
Amy Shepherd is a third year PhD student from the Florey Institute of Neuroscience and Mental Health at the University of Melbourne in Australia. Her research focuses on better understanding cognition in Alzheimer's disease using a specialised touchscreen for mice with Dr Emma Burrows and Prof Anthony Hannan.
Best Rapid Fire Presentation
The "Music, Mind and Movement (MMM)" Program for People with Dementia
Olivia Brancatisano completed her MSc in Music, Mind and Brain at Goldsmiths, University of London in 2014. She is currently undertaking her PhD at Macquarie University under the supervision of Professor William Thompson and Dr Amee Baird, investigating ‘seven capacities of music’ and their therapeutic value for individuals with dementia. Her research interests are primarily in the underlying neural mechanisms of music as a rehabilitative tool for various neurological disorders such as stroke, Parkinson’s disease and dementia. She is a member of the Music, Sound and Performance Lab and the ARC Centre of Excellence in Cognition and its Disorders.
Best Poster or Presentation Describing Methods for Public Involvement in Research
Cath Bateman and Annaliese Blair, Southern NSW Local Health District
The “Golden Angels” Effects of trained volunteers on patient and family carer outcomes for people with dementia and delirium in rural hospitals
Catherine is a Registered Nurse and holds a Bachelor of Health Science (Nursing) and Master of Nursing (Research). Catherine has over 38 years’ experience working in acute, community and residential care in clinical, research, project and management positions. She currently works as Dementia Delirium CNC in Southern NSW LHD and is committed to improving quality of care for older hospitalised patients. In 2014 Catherine was awarded the NSW Excellence in Nursing and Midwifery Judith Meppem Lifetime Achievement Award for her contribution to nursing and in 2016 was the recipient of the HETI Rural Research Capacity Building Program Research Translation Award.
Annaliese Blair holds a masters in Clinical Psychology and is a Clinical Psychologist with the Southern NSW Local Health District Aged Care Evaluation Unit. She has been in this role for over a decade, overseeing research projects aimed at alleviating problems associated with ageing, including dementia, as well as problems experienced by carers. Annaliese has extensive experience working in inpatient units, residential care setting and community mental health teams providing psychosocial interventions for older people with mental health problems and/or dementia, their carers and nursing staff and as a Senior Policy Officer with the Older People’s Mental Health Unit.
Best Presentation by a Person with Dementia or Carer
Isabelle Burke, Dementia Australia
Isabelle Burke is a consumer advisor with Dementia Australia and carer for her mother, who was diagnosed with younger onset dementia four years ago. Isabelle wants to emphasise the need for early diagnosis, and improve services and care for dementia patients, and believes passionately in the benefits of involving consumers in research.
Dr Suzanne Dyer for Higher consumer quality rating for cluster models of residential care
Suzanne has been working within research, Health Technology Assessment (HTA) and guideline development for more than 20 years. She has worked in clinical research and HTA settings both in academic organisations and within private health economics consultancy. In particular she has expertise within the rehabilitation field and in HTA of diagnostic and screening technologies, with extensive experience in conducting systematic reviews and rapid reviews across a range of topics.
She was a key researcher involved in producing the NHMRC approved clinical practice guidelines for dementia in Australia. She is currently managing the NHMRC Cognitive Decline Partnership Centre INSPIRED cross-sectional study of models of residential aged care for people living with dementia in Australia.
Living with Dementia
Dr Michele Callisaya for The impact of cognitive impairment on markers of community ambulation
Michele works as a Clinical Lead physiotherapist in Aged Care and Rehabilitation at the Royal Hobart Hospital and Senior Research Fellow - University of Tasmania. In 2010 she completed a PhD from the University of Tasmania. This put her in a strong position to successfully obtain an NHRMC Early Career Fellowship (2012-2015 0.6 FTE) at Monash University to examine the relationship between brain ageing, physical function and falls. In 2015 she received a Select Foundation Senior Research Fellowship at the University of Tasmania to investigate the role of exercise on brain health in people and in 2017 a NHMRC Boosting Dementia Research Fellowship. She heads the Brain Ageing group and has over 20 years of clinical experience as a physiotherapist.
Intervention and Treatment
Dr Angela D'Rozario for Targeting Sleep Spindles to optimise sleep quality and improve memory in mild cognitive impairment
Angela is an early career clinical researcher and NHMRC-ARC Dementia Research Fellow at the School of Psychology, University of Sydney and NHMRC NeuroSleep Centre of Research Excellence (CRE), Woolcock Institute. She leads the facility for High-density Electroencephalography Investigation at the University of Sydney and is the Sleep Neurobiology Theme Research Leader at CIRUS, Centre for Sleep and Chronobiology. She was awarded an NHMRC-ARC Dementia Research Development Fellowship (2016-20) for her work investigating links between abnormal sleep neurophysiology and cognitive decline in dementia.
Assessment and Diagnosis
Dr Nawaf Yassi for Comorbidity of cerebrovascular disease and amyloid-B and its influence on rates of cognitive decline and neurodegeneration
Nawaf is a stroke neurologist and stroke research fellow based at the Melbourne Brain Centre at The Royal Melbourne Hospital. He has a special interest in using advanced neuroimaging techniques in the investigation of acute stroke and in predicting clinical outcome after stroke. He is involved in the acute stroke service at The Royal Melbourne Hospital and is currently completing a PhD focusing on advanced imaging in stroke. He holds an Australian Postgraduate Award for his postgraduate study and also received the Neurosciences Victoria Brain and Mind Scholarship in 2012. He has an interest and is actively involved in medical education as an honorary fellow of the University of Melbourne, Faculty of Medicine, Dentistry and Health Sciences.
Dr Stephanie Ward for Insomnia symptoms, short sleep duration and sleep medication use is associated with lower cognitive function in healthy older adults
Stephanie has research interests in the relationship between neuroimaging biomarkers with sleep and cognition in older adults. She is a practising geriatrician with Western Health, Melbourne and has experience in diagnosis of dementia in a wide variety of settings. She is currently involved in establishing the Australian Dementia Network (ADNeT) - a pilot dementia clinical quality registry that aims to improve dementia diagnosis standards.
Boosting Dementia Research Initiative Early Outcomes announced
Speaking at the International Dementia Conference in Sydney last month, Minister for Aged Care, the Hon Ken Wyatt MP, formally launched the Boosting Dementia Research Initiative Early Outcomes Report, saying that collaboration and investment were key to building on the advances in dementia research.
“Dementia is the second leading cause of death in this country — and for women it has eclipsed heart disease to be the leading cause,” Minister Wyatt said.
“Currently, there’s no cure for dementia, which is why it’s so important we continue to work together and invest in dementia research.”
The report provides details of 127 grants awarded to 285 leading dementia researchers, across 24 universities and research institutions. Seven case studies are also featured in the Report, detailing significant successes in dementia research across prevention, treatment, diagnosis and care.
Involving Consumers in Research Communique
A Communique was developed at the NHMRC National Institute for Dementia Research's Dementia Care Forum 2017: Involving Consumers in Research towards Better Care Outcomes. The Forum took place on Wednesday 18 October as part of the Dementia Australia National Conference 2017, in Melbourne. The Forum involved 29 participants, including people with dementia, carers, and representatives from research organisations, peak bodies, and government.
AIHW Dementia Statistics Update
Australia's Health 2018 is the AIHW’s 16th biennial report on the health of Australians. It examines a wide range of contemporary topics in a series of analytical feature articles and short statistical snapshots. The report also summarises the performance of the health system against an agreed set of indicators.
AIHW reports that an estimated 376,000 people in Australia had dementia in 2018; this figure is projected to grow to 550,000 by 2030. Among people aged 65 and over, dementia was the second leading cause of total burden of disease in 2011 (accounting for 7.8% of years of life lost due to illness or death) and the leading cause of non-fatal burden (accounting for 10% of years of life lost due to living with the disease). Dementia and Alzheimer disease was the leading cause of death for females, accounting for 8,447 (11%) deaths, closely followed by coronary heart disease (8,207; 11% of deaths). Click here to read the full update.
Australian researchers respond to Oxford study on exercise and dementia
A study from the Universities of Oxford and Warwick have revealed that a commonly prescribed treatment for dementia – moderate to high intensity aerobic and strength exercise – does nothing to slow the progress of cognitive decline.
Published in the British Medical Journal, the study found that of 494 total participants with mild to moderate dementia, the 329 assigned to an aerobic and strength exercise program showed a slight increase in cognitive decline, when compared to the 165 assigned to usual care.
The study has prompted several prominent Australian researchers to respond with their concerns regarding the limitations of the study’s design – primarily, the long periods participants undertook physical activity without supervision and a lack of transparency on the duration participants were engaged in moderate exercise. As such, the findings may reflect the impact of a low, rather than a moderate to high, intensity exercise program.
Professor Henry Brodaty, co-Director at the Centre for Healthy Brain Ageing at the University of New South Wales points out that the study emphasises the importance of having expert advice on the correct training program.
“The Dementia and Physical Activity (DAPA) study has been heavily cited in the media, but our reading of the paper is that it points out that exercise that is not done with sufficient intensity is not effective,” said Professor Brodaty.
“For example, one way to increase strength is for a person to wear an external weight in the sit-to-stand exercise. We calculated that the median weight added during the 4 months of the supervised trial was only 2.8 kg, which is very little.”
Critics of the study have also been quick to note that the decline in cognition shown by the participants assigned to physical activity was small, and possibly not clinically relevant.
Despite the results of the Oxford University study, it is well documented that regular physical activity throughout life can lower the risk of developing dementia. The Australian Guidelines recommend at least 2.5 hours of moderate intensity physical activity each week as well as muscle strengthening activities on at least 2 days each week. Exercise is also an important part of a healthy lifestyle and has many health and psychosocial benefits.
For tips about brain health and how to reduce your risk of dementia, visit the Your Brain Matters website.
New research: Art and dementia
Can art improve the lives of people with dementia? Dementia Australia Research Foundation scholar, and PhD candidate at the University of Canberra, Nathan D'Cunha is trying to find out just that. Collaborating with the National Gallery of Australia's existing Art and Dementia program, Nathan is tracking whether regular social activity and engagement with art can stabilise cortisol levels in people with dementia. Nathan recently spoke to the Canberra Times about the program - to find out more about Nathan's research, read the article here.
Cognitive Decline Partnership Centre Supported Decision Making Webinar Series | August 2018 | Online
Supported decision-making is a rights-based approach that aims to enable and support a person’s involvement in decision-making. This webinar series from researchers in the Cognitive Decline Partnership Centre explains the principles of supported decision-making, and provides a range of practical strategies and resources for supporting decision-making for people living with dementia. The sessions cover supported decision-making from different perspectives, and each stands alone. Featuring research evidence, practical resources, and discussion with people with professional and lived experiences, these webinars will assist you in understanding and beginning to implement supported decision-making.
Clinical Trials Impact & Implementation Forum | 28 August | Melbourne
ACTA’s Impact & Implementation of CTN Trials Reference Group is hosting a forum tailored to trialists involved in protocol design and optimising evidence uptake in Australia’s healthcare system. The forum will include a keynote presentation from leading international implementation scientist, Professor Jeremy Grimshaw, whose research focuses on the evaluation of interventions to disseminate and implement evidence-based practice. There will also be presentations on trials and implementation from the crucial perspective of policy-makers and research funders. Click here to register your attendance.
Australian Research Management Society Conference 2018 | 21-27 September | Hobart
The 19th Australasian Research Management Society Conference 2018 aims to build discussion across all areas of research administration and management on how best to position and support research for future global and local needs, what infrastructure is needed to invest in now for the future, and how to ensure research creates an impact. Visit the ARMS 2018 Conference website to find out more.
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, demsontrating the global nature of research on frontotemporal dementia and related conditions. Earlybird prices are available until 6 August. Visit the ICFTD Conference website to find out more and register your attendance.
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’. Earlybird registrations are open until 20 September. Visit the AAG Conference website to find out more.
Health Research and Consumers: Good Thinking Issue 22 | April 2018
In this edition of Health Voices, leading Australian researchers and health consumers examine how consumers can influence research.
Click here to read the latest issue.
Thinking Differently Report
Preparing today to implement future dementia treatments, Alzheimer's Research UK, March 2018
This report identifies potential challenges future dementia treatments could face, makes recommendations for work to overcome those challenges, and outlines objectives for the Dementia Access Taskforce (UK). Click here to read the full report.
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.
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.