With Easter now behind us, in this Dementia Dispatch we report excellent progress in delivering the NNIDR 2017-2019 work program.
The ADF2018 Call for Abstracts has just closed and this year we seek to draw out discussions around the Institute’s founding principles. Presentations are sought that highlight success and learnings in the pursuit of collaboration on internationally relevant and linked research across all aspects, from prevention to cure and care. We’re proud to support the visits of three international keynote speakers who will not only speak at the event, but who will also be spending time with research groups around the country. Thanks are extended to Elizabeth Beattie, Paul Gardiner, Tony Hannon and Clement Loy for identifying and then organising our keynotes. We’re excited to be able to encourage, through travel fellowships, early career researchers in other countries who are currently collaborating with dementia research teams in Australia. An idea put forward by former staff member Jo Haslam, Forum Chair Glenda Halliday and the Organising Committee were enthusiastic adopters. And we are particularly pleased that this year we can bring forward stories of how Australian teams are actively involving people with dementia, their families and carers in research. Board member Jane Thompson has been a great champion of public involvement as a hot topic at the Forum.
Newsletter highlights this month include the report on progress of one of the special interest groups formed through the round table meetings held at ADF2017. Mirella Dottori, Lezanne Ooi and just under twenty other early to mid-career researchers at the Illawarra Health & Medical Research Institute in Wollongong recently, to explore their mutual interest in stem cells and organoids for new therapeutics. It’s the beginning of a long journey of discovery on what they can best do together, and what questions to concentrate on to be at the forefront of this high potential new research area. Please take the time to read the report, and if you are not currently involved in a special interest group, please consider either joining or convening a round table discussion in your research area.
In another related development, South Australian members under the leadership of Hannah Smith, Tobias Loetscher and Hannah Keaghe, are establishing a seminar series to bring dementia researchers together in that State. These kinds of events will catalyse research and its translation through coordination, ideas exchange and awareness raising. If you would like to start organising events in your locality please let us know.
I am also pleased to report that the NNIDR membership is growing, with almost 100 new members joining in 2017. Our new database is capturing more information on individual members, allowing for improved tailoring of communications and more granular reporting. A strong, engaged membership will be an important outcome from the Boosting Dementia Research Initiative and this includes being prepared, as members, to contribute to Australia’s dementia research strategy. See further details in this Newsletter on how you can contribute to NNIDR’s annual review of the Strategic Roadmap for Dementia Research and Translation.
You may already have met the new staff of NNIDR – please make them welcome. Bojana Kos has joined us as Communications Officer; Stephanie Ellis and Robyn Clough share the Policy and Governance Officer role; Pauline Gallacher has responsibility for projects and reporting, and Lauren Saunders provides Executive support. With a broad range of Institute projects currently being advanced, there will be a number of openings for project support positions as well. Next month we will be in a position to update you on some of these projects.
There is a great deal of good work underway, and much more to be done if NNIDR and the Boosting Dementia Research Initiative are to achieve their full potential in achieving better outcomes for people with dementia, their families and carers. I look forward to working with all members and stakeholders during this pivotal next phase of the Institute’s work.
Call for submissions: Annual Review of the NNIDR Strategic Roadmap for Dementia Research & Translation
- In South Australia, the NNIDR Director met with Ashleigh Smith, Hannah Keaghe and Tobias Loetscher and was briefed on a developing program they have with the SA Department of Education. The program seeks to build understanding of dementia amongst younger students by introducing them to the condition, and to people with dementia in aged care facilities. I also met with Tuan Nguyen, whose program of research in prescribing policy has evolved into a role advising the Vietnamese Government on national dementia policy. NNIDR was able to introduce Tuan to government representatives through Alzheimer’s Disease International.
- In Western Australia, the Director met with Nicole Smith and was introduced to her laboratory at the University of Western Australia, and with Ryu Takechi and his colleague and Centre Director, John Mamo.
The NNIDR Director was also able to meet with the following researchers to brief them on NNIDR’s activities and discuss their research programs:
- Alex Brown, SAHMRI, also to discuss the proposed Indigenous Care Research Forum
- Bob Richardson, University of Adelaide
- Jeremiah Peiffer and colleagues in exercise physiology, Murdoch University
- Leon Flicker and colleagues, also to discuss statistics and epidemiology
- Caroline Vafeas and colleagues, School of Nursing Edith Cowan University
- Wendy Moyle, Stephen Wood, Ramya Mandyam, Raya Monteiro and colleagues, Griffith Institute for Drug Discovery, Griffith University
- Briony Dow and Bianca Brijnath, National Ageing Research Institute, also to discuss working with culturally and linguistically diverse communities to advance dementia research toward prevention, delay and better care.
At their request, the Director also briefed research managers from the University of Western Australia and the University of Adelaide on the Boosting Dementia Research Initiative.
In her capacity as a Board member for the European Joint Program for Neurodegenerative Diseases, the Director has registered Australia as a contributor for active participation in three Framework Working Parties, the agendas for which are in development by the JPND Secretariat:
- Precision Medicine. The Working Party meets on March 12 in Paris to discuss the development of a joint call for proposals.
- Overcoming the Loop of Innovation.
- Assessment of Impact.
- Globalization, Partnerships, P2P Communication
It is anticipated that there will be important learnings for Australian researchers through involvement in discussions. EAP will be updated and input sought once more is known.
- Director NNIDR sought advice from NHMRC Consumer and Community Engagement Committee member, Anne McKenzie, on proposed actions arising from the NNIDR Consumer Forum October 2017 and took advice from Board member, Jane Thompson, towards implementation of an action plan.
Government briefings have included:
- Jo Mond, First Assistant Secretary, Specialised Programs and Regulation Branch, Department of Health
- Erica Kneipp and Maria Travers, Medical Research Future Fund, Department of Health
- Mike Rungie, former Board member and member of the South Australian Economic Development Board
Director NNIDR also participated in the NHMRC Stakeholder Workshop on Peer Review Models, which provided valuable insights into research community perceptions of NHMRC’s change agenda.
NNIDR Program Directors
- The Director chaired the February 2018 meeting of the Cognitive Decline Governance Authority and two meetings of the Dementia Centre for Research Collaboration Executive Group. NNIDR has facilitated the finalization of the DCRC Funding Agreement, bringing NHMRC and DCRC Directors together to finalize the proposed arrangements.
- She also met separately with Elizabeth Beattie to discuss the potential for NNIDR and Dementia Training Australia to work together on particular initiatives that could advance the translation of well-evidenced research into clinical care and practice.
The ideas and issues raised through discussion with stakeholders are valuable contributors to the environmental scan that will inform this year’s review of the Strategic Roadmap for Dementia Research and Translation.
Proposed Indigenous Dementia Research Forum
The Proposed PCIC Indigenous Dementia Research Forum is starting to take shape with input from Prof Sandra Eades. Dr Kate Smith, WA, has agreed to co-chair. The Forum may be held in Melbourne and not in Sydney at ADF 2018.
National Roadshow in 2018 / Nationally focused feedback and engagement activity
NNIDR is required to deliver another nationally focused feedback and engagement activity by June 2019. The first activity – a national roadshow led by Prof Brodaty – was delivered in 2017. The Secretariat has invited suggestions from EAP members.
NNIDR Strategic Roadmap for Dementia Research and Translation (the Roadmap) outlines the vision, objectives, principles and priorities for the NNIDR that underpin our activities. The Roadmap was adopted in July 2016.
NNIDR is reviewing the Roadmap to ensure that our activities, including the recommendations we make on dementia research investments, are well-informed. And we want to make sure the Roadmap keeps pace with progress to date and reflects emerging dementia research issues and opportunities.
We invite written feedback from our members and stakeholders.
ADF2018 is fast approaching - book before 23 April to secure our Early Bird rates!
We're looking forward to welcome our keynote speakers Professor Rachel Whitmer, Professor Joseph Gaugler, Simon Denegri and Dr Carol Dobson-Stone to Sydney 4-5 June, and of course to hear from you about the latest developments in dementia research across prevention, assessment and diagnosis, treatment and intervention, living with dementia, and care.
We're also pleased to announce that Sydney's Vivid Festival will be well underway during the conference - to see what's happening around town, check out the festival program.
For many older Australians, and particularly those with dementia, relinquishing their driver’s licence is a pivotal and potentially overwhelming event. The decision to hand over the car keys can prove difficult, leaving many feeling as if they have lost their independence. It also presents a challenge to primary carers, and GPs – often tasked with delivering the difficult news.
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 they should stop driving.
Dr Scott has found that timing is everything when it comes to relinquishing a driver’s licence.
“The transition to non-driving comes at significant personal cost, including 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.
“Changes to driving status not only impact the individual stopping driving but also their family members supporting them. Often people are less upset with the process if they come to the conclusion themselves earlier rather than later.”
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. CarFreeMe participants collaborate with a trained health professional, one-to-one and in small group sessions, to develop tailored solutions to individual needs based on their location and access to alternative forms of transport.
In addition to the trials underway in Queensland, Dr Scott’s team is developing a telehealth resource for general practitioners, primary carers and health professionals to manage this significant change.
Dr Scott hopes that this resource will be particularly helpful for general practitioners in rural and remote areas, where transport options are limited, and practitioners have often developed a relationship with patients over a significant period. In these instances, delivering the news that a patient can no longer drive can have long-term care implications, fundamentally changing the relationship and sometimes resulting in patients seeking care elsewhere.
“Clearly this is upsetting and damages the doctor-patient relationship,” says Dr Scott.
Ultimately, the CarFreeMe program and resources aim to involve families and carers in the intervention process, resulting in better outcomes for people with dementia.
“This resource will help people realise they have a life outside of driving. It was developed with input from people who have experienced driving cessation and what they said they needed to adjust and remain active and connected to their community.”
National Dementia Conference 2018 | 15-16 May | Melbourne
The National Dementia Conference brings together senior level experts to network and discuss the challenges, opportunities and strategies for dementia care and provides a unique platform for sharing experiences and exploring examples of best practice. For more information, visit Informa's website.
Cochrane Public Involvement Network Webinar | 22 May | London, online
Cochrane has recently helped to launch the International Network for Public Involvement and Engagement in Health and Social Care Research (#globalPPInetwork). A series of webinars and a meeting in person at the Royal Society will be held in London and also online on 22 May 2018. Follow the conversation on Twitter #globalPPInetwork, or visit Cochrane's website for more information
HammondCare International Dementia Conference | 7-8 June | Sydney
Choice is the central theme of the HammondCare International Dementia Conference 2018. Consumer directed care, change and competition in the open market of Australia’s home care, specialist dementia care units and palliative care are just some of the issues that will be considered and debated. For more information, visit HammondCare's event page.
3rd Australian Biology of Ageing Conference 2018 | 25-26 June | Brisbane
This conference is aimed at fostering new cross-disciplinary collaborations in the scientific community, by bringing together researchers from diverse fields including stem cell biology, regenerative engineering, metabolism, epigenetics, cell biology, systems biology, neurobiology, proteomics, cancer, physiology, geriatric medicine, nutrition and genomics. Visit the conference website for more information.
Alzheimer's Association International Conference | 22-26 July | Chicago
Every year, AAIC convenes the world’s leading basic science and clinical researchers, next generation investigators, clinicians and the care research community to share research discoveries that will lead to methods of prevention and treatment, and improvements in diagnosis for Alzheimer’s disease. In the tradition of the Alzheimer's Association International Conference on Alzheimer's Disease (ICAD), AAIC 2018 will bring together leaders from more than 70 countries to network and discuss the latest dementia study results and theories. Visit the conference website for more information.
Alzheimer's Disease International 33rd Conference | 26-29 July | Chicago
One of the longest running and largest international conferences on dementia, the ADI 33rd Conference will feature a range of keynote speakers and a high standard of scientific and non-scientific content, enabling participants to learn about the latest advances in the prevention, diagnosis, treatment, treatment care and management of dementia.For more information, visit ADI's event page.
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.
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.