From the Director, Prof Chris Rowe
Welcome to the first newsletter edition of 2022. Highlights in this issue include:
· Early bird registrations for the Australian Dementia Research Forum 2022 are now open
· The ADNeT Registry and Dementia Australia celebrate consumer involvement to the Registry
· Vale Bails Myer tribute
· Early-mid career sponsorship program is now open to applications
· Screens and Trials progress in South Australia
· Updates on grant opportunities
· Webinars and more.
I hope you enjoy this month’s newsletter.
Early Bird registrations now open for the Australian Dementia Research Forum 2022
The Australian Dementia Research Forum 2022 (ADRF2022) is the premier annual event for Australian dementia research, bringing together dementia researchers, health professionals and policy makers, as well as people living with dementia and their families and carers. The theme for next year’s ADRF2022 is: Early Diagnosis – Effective Treatment with five specific submission themes.
The 2022 conference will take place in a fully virtual environment, offering virtual attendance and presentation options. The forum is suited to medical specialists, students, researchers, health practitioners and people living with dementia and their carer
Find out more about ADRF2022, our keynote speakers and register for your early-bird tickets today.
ADNeT Meeting with Consumer Advocates
The ADNeT Registry started 2022 on a high, co-hosting a virtual event with Dementia Australia on the 21st January in celebration of consumer involvement to the Registry. This occasion provided the opportunity to highlight and affirm the valuable roles Dementia Advocates (people living with dementia or mild cognitive impairment and their carers) play in helping the Registry incorporate their lived experience in Registry operation and key documents.
The event was opened by Dr Stephanie Ward (ADNeT Registry Steering Committee Co-Chair and Clinical Lead), Professor Chris Rowe (ADNeT Director), and Ms Maree McCabe AM (CEO Dementia Australia) who provided an overview of ADNeT and the Registry and the Memorandum of Understanding between ADNeT and Dementia Australia.
The event showcased how Dementia Advocates have helped to shape the ADNeT Registry since 2018, such as providing strategic advice via consumer representation in the Steering Committee and co-designing the first patient and consumer surveys for a dementia registry via the Survey Working Group and consumer consultation. Over the last four years, the Registry has benefited from the contributions of more than 30 Dementia Advocates.
Without a doubt, the highlight of the gathering was listening to four Dementia Advocates sharing their experiences of working with the ADNeT Registry.
Ann Pietsch – Person living with dementia and member of ADNeT Registry Steering Committee
“The vision of ADNeT is to drive improvement and quality of care and patient outcomes, and I think anything that can help to do that is working really well for dementia and people with dementia….The absolute commitment that has been shown to people like myself before the meeting and after, the way we are looked after is like royalty. Except I don’t have a crown. Just knowing we have that respect, and it’s a genuine respect, is terribly empowering. You make it so easy for us to have input. I value it very greatly.”
Tara Quirke – Former carer and member of ADNeT Registry Steering Committee
“Out of all my involvement with many groups this has been one of the most inclusive, respectful groups that are interested in hearing our voice. Truly part and parcel of what we’re doing, and I can only see it going from strength to strength.”
Scott Cooper – Person living with dementia and member of ADNeT Survey Working Group
“I think it’s important for people living with dementia and their carers to input into the way the clinics are doing a fantastic job of trying to diagnose and improve the outcomes of patients and their carers. Anything I can do to help that is pretty important. I am quite passionate about it. I don’t spend time doing stuff I don’t want to do, but this is certainly stuff I want to do….I am not good with words anymore because to my condition but I can put a practical view on things. I think the team, the A-team as I call it, tries to come up with the best outcome for the patient and the carer.”
Jenny Fitzpatrick – Carer and member of ADNeT Survey Working Group
“I feel so honoured to be invited to be a part of this and to find myself working with Scott and Barbara and Xiaoping. We just bounce off each other and support each other and it’s amazing…There’s a lot of humour, fun and energy in the group. The other part is that the raw data that I feel I still bring is taken very seriously, both in the survey group and in the bigger group.”
There was certainly a buzz of excitement in the air at the close of the event. The power of shared experiences and recognition of each consumer’s personal contribution left attendees energized and feeling great anticipation about what the collaboration can achieve over the next 12 months.
Vale Baillieu Myer
It is with great sadness that we farewell Baillieu ‘Bails’ Myer on January 22, 2022.
Aside from his extensive retail history, Bails Myer was also a great philanthropist. Alongside his wife, Sarah, Bails founded The Yulgibar Foundation and Yulgilbar Alzheimer’s Research Program (YARP).
Bails’ generosity and support through Yulgilbar Foundation contributed to the success of ADNeT. We have now established the first national clinical quality registry on dementia, published practical and aspirational guidelines for memory clinics, provided a platform to increase clinical trials in Australia and increased access to new diagnostics.
YARP has supported Australians from all walks of life for more than two decades and Bails loved all aspects of his work, being interested in every project supported by The Yulgilbar Foundation and attended every meeting of the Foundation up until his death.
Bails is survived by his wife Sarah and three children.
The ADNeT Early and Mid-Career Sponsorship program
The ADNeT Early-mid career Accelerator group is establishing a 12-month sponsorship program for Australian dementia researchers to build capacity in early and mid-career researchers. They will match you with a senior researcher who will agree to meet with you four times over the year to provide strategic career advice and opportunities.
Benefits to EMC Researcher
- Opportunities to expand your network, building new collaborations with senior dementia researchers
- Gain insights into your own skills and capabilities, boost your self-confidence in the things you do well whilst also identifying areas for growth and improvement
- Learn about the different paths one can take in research, helping you refine strategies to take the next step in your own career development.
How to participate
Please complete this google form https://forms.gle/WYveaRpXTgJRKJ2T8. The information will assist your proposed sponsor in understanding your background and career highlights, in order to determine whether they are a good ‘fit’, as well as to provide some context to building up to a sponsor/sponsee relationship over the course of the 12-month program.
For more information: www.australiandementianetwork.org.au/2022/02/24/adnet-sponsorship-program/
Please respond to this call for sponsees by COB March 18 2022.
Have your say in Australia’s dementia pathways
In Australia, we currently don’t have clear or consistent dementia care pathways. The development of a comprehensive and accessible post-diagnostic support pathway for people with dementia was one of the recommendations from the Royal Commission into Quality and Safety in Aged Care. This pathway documents the roles of GPs, specialists and other services and how they co-operate in supporting people with dementia.
A team of researchers from around Australia, led by ADNeT Associate Investigator Professor Lee-Fay Low, are currently developing a dementia care pathway. Input is sought into the draft pathways from people with dementia, carers and health and aged care professionals, policy makers and academics.
Click here for more information and to complete the survey. The survey will close on the 5th March 2022.
If you have any questions, please contact Dr Annica Barcenilla-Wong (email@example.com).
ADNeT Screens and Trials- South Australia
ADNeT Screens and Trials initiative seeks to accelerate the development of effective therapies to prevent or treat dementia and give more Australians access to the latest potential therapies through participation in trials.
The South Australian Health and Medical Research Institute (SAHMRI) is a partner site with the Australian Dementia Network that screens patients for referral to available clinical trials. Screening at SAHMRI commenced in October 2020 and since then 313 individuals have expressed an interest in participating in the program.
This initiative will help Australian researchers find participants to trial their therapeutic discoveries and for longitudinal observational research to be undertaken to learn more about the development of Alzheimer’s disease and other dementias.
100 individuals have completed their first visit to the clinic and 58 have completed the full screening process.
SAHMRI are currently partnering with EISAI pharmaceuticals for the AHEAD study and are looking for individuals aged 55 and above, who are cognitively well and interested in participating in clinical trials aiming to help prevent memory problems in the future.
The South Australian Screens and Trials were recently featured on Channel 9 news. Watch it here
Register your interest by email: firstname.lastname@example.org
Register for the ADNeT research volunteer portal
Grants for early to mid-career researchers
Are you an early to mid-career (EMCR) dementia researcher looking for grant opportunities, but not sure where to start? The ADNeT EMCR Accelerator group have put together a list of both dementia specific and general EMCR grant opportunities all in one place.
If you know of any others, please don’t hesitate to contact either Ayeisha Milligan Armstrong (email@example.com) or Dr Julien Bensalem (firstname.lastname@example.org). The list will be updated regularly with dates and status of application rounds.
Newcastle Screening site performs first ADNeT PET scan
The Prospective Imaging Study of Ageing (PISA): Genes, Brain and Behaviour studies the interplay between genetic, epigenetic and environmental factors for dementia, and also aims to identify risk factors that could be modified through intervention – such as lifestyle choices.
Outcomes of the study will inform and establish a platform for future intervention programs that target preventing and treating dementia.
ADNeT has teamed with the Newcastle screening site to deliver their first PET scan to patient Marian Henderson, who describes herself as a “happy and healthy guinea pig”.
Dr Natalie Rutherford, Clinical Director, Nuclear Medicine & PET Department, Hunter New England Imaging said of the partnership, “We are super excited about joining the team and learning how we too can aid in the fight against dementia, which is such a debilitating and often hidden disease.”
Pictured L-R: Dr Natalie Rutherford, Michael Breakspear, ADNeT Technology Clinical Lead, and patient Marian Henderson.
Webinars: Catch up viewing
Vascular Cognitive Disorders
The characterisation of vascular cognitive disorders has seen several modifications since the 1970s. There are several terms and sets of criteria in current use, and full harmonisation of the field has not been achieved.
In the first half of this webinar, Prof Perminder Sachdev discusses the current status of the field of cognitive impairment related to cerebrovascular diseases. He highlights the heterogeneity of the aetiology, cognitive profile, neuroimaging, and neuropathology, as well as discussing the key research questions and approaches to take toward a consensus.
In the second half of the webinar, Dr Matt Paradise discusses the neuroimaging requirements for a diagnosis of vascular cognitive disorder. He discusses some of the limitations of traditional methods of MRI-based quantification of cerebrovascular disease, before talking about newer methods and modalities, including the use of cerebral microbleeds, dilated perivascular spaces, WMH volumetrics, DTI and finally indices of cerebrovascular disease.