NEWS

WORDS FROM OUR PRESIDENT

 As many of you know, I work in the dementia space, running FRONTIER, the clinical research group on frontotemporal dementia and related younger-onset dementias at the Brain and Mind Centre of the University of Sydney. We see primarily people who exhibit changes in behaviour, personality and cognition in their 40s or 50s. Indeed, dementia is not just a disease of old age with 10% of individuals living with dementia being younger than 65 years. Not surprisingly, dementia in that age group is associated with challenges that are different to a dementia diagnosis later in life, affecting families in their working life, and often with young children. 

I have just returned from the International Conference on Frontotemporal Dementias, which was held in Lille, in Northern France in early November. The excitement among delegates and speakers of the conference was palpable. For many – myself included – it was their first international conference since 2019. Being able to reconnect with friends and colleagues face to face was a real treat. Many new projects and international collaborations were discussed during the few days of the conference! This enthusiasm demonstrates the importance of direct contact in social interactions and the limitations of virtual meetings. Indeed, many of these new ideas were hatched on the sideline of the program, either in between sessions or during the many social events that took place during the week.

Aside from this conference, it has also been exciting to see the progress made in the field of pharmacological treatments for dementia. Results from a clinical trial for Alzheimer’s disease were recently reported. The drug, Lecanemab, is a monoclonal antibody that has been demonstrated to reduce the amount of beta-Amyloid in the brain, one of the two toxic proteins involved in Alzheimer’s disease. Whilst definite evidence for a clinical impact of the drug is still pending, this new drug is promising and gives hope to thousands of people living with the most common form of dementia around the world.

In the field of frontotemporal dementia, the field is not as advanced, in part because of the multiple causes and different biological mechanisms involved in this type of dementia. Nevertheless, at the Lille conference, no fewer than 9 pharmaceutical companies presented preliminary data or outlined proposals for clinical trials to test novel compounds in frontotemporal dementia. When we organised the last conference on frontotemporal dementia in Sydney in 2018 (the 2020 meeting was cancelled because of COVID), only one pharmaceutical company was present. In addition, this company was focusing on symptom management, rather than on disease-modifying treatment. 

The progress made in the past four years in this field has been truly outstanding and is indicating that real changes are on the horizon for the 400,000 people living with dementia in Australia and their families, although treatments are still likely some years away. Until then, we need to make sure that effort continues towards the development of appropriate services, support, and infrastructures that are still lacking.

As this is the last ‘words from the President’ for 2022, I would like to take this opportunity to wish you all a merry Christmas and a healthy and prosperous 2023.

Until next time, stay well and stay safe.
Olivier Piguet, President, ASSBI

ASSBI is in the process of refreshing and improving our website. As a result, you might come across pages that are still in development (i.e. not fully functioning yet) , or find that some existing pages are temporarily unavailable. We thank you for your patience over this interim period and will endeavour to complete the updates as quickly as possible.

NEW PUBLISHED ARTICLE
Sense of Self after Brain Injury 

Acquired brain injury (ABI) can affect virtually any aspect of a person’s functioning. At the deepest level, it can alter sense of self or the unique and persisting qualities that define who we are. Understanding changes to self after brain injury can be challenging for the person, family members, clinicians and researchers. 

Dr Julia Schmidt (The University of British Columbia) and Professor Tamara Ownsworth (The Hopkins Centre, Griffith University) have recently edited a special issue on the topic of Self after Brain Injury for the journal Neuropsychological Rehabilitation (Volume 32, Issue 8). This edited volume comprises 19 articles from authors around the world. The articles cover theories, clinical frameworks, strategies and interventions relevant to understanding and managing changes to self after ABI in childhood and adulthood.  

NEW PUBLISHED ARTICLE
Utility of the Addenbrooke’s Cognitive Examination-III online calculator to differentiate the primary progressive aphasia variants

David Foxe†, Anne Hu†, Sau Chi Cheung, Rebekah M. Ahmed, Nicholas J. Cordato, Emma Devenney, Yun Tae Hwang, Glenda M. Halliday, Nicole Mueller, Cristian E. Leyton, John R. Hodges, James R. Burrell, Muireann Irish, Olivier Piguet

Brain Communications https://doi.org/10.1093/braincomms/fcac161 Abstract video: https://youtu.be/RRAMxKJ6A4E

† These authors contributed equally to the work.

What the study is about
Primary progressive aphasias (PPA) are rare younger-onset dementias that primarily affect speech and language functions. Recent findings suggest that the three variants of PPA (logopenic: lv-PPA; non-fluent: nfv-PPA; semantic variant: sv-PPA) can be distinguished based on their distinct profiles on the subdomain scores of a widely used general cognitive screening test, the Addenbrooke’s Cognitive Examination-III (ACE-III) (Foxe et al. 2021; Leyton et al. 2013). In this study, we investigated the utility of the ACE-III to differentiate the PPA variants based on their item-by-item performance profiles on this test. From these results, we created an interactive ACE-III PPA online calculator which predicts the variant based on a patient’s unique ACE-III item-by-item profile.

What we did
We conducted multinomial regression analyses to establish performance profiles among groups, and R Shiny from RStudio was used to create the interactive ACE-III PPA diagnostic calculator. To verify its accuracy, probability values of the regression model were derived based on a 5-fold cross validation of cases. The calculator’s accuracy was then verified in an independent sample of PPA patients who had completed the ACE-Revised (ACE-R: an older version of this test) and had in vivo amyloid-PET imaging and/or brain autopsy pathological confirmation.

What we found
Our ACE-III PPA diagnostic calculator demonstrates sound accuracy in differentiating the variants based on an item-by-item ACE-III profile. The calculator is freely for clinicians and is suitable for most clinical settings http://shiny.maths.usyd.edu.au/PPA_diagnostic_calc/

The Kevin Walsh encouragement award for the most outstanding masters degree student

After searching and screening, data was extracted from the 16 articles included in the systematic review.  The following synthesised findings were produced:

•         Patients and carers feel generally unprepared to manage at home after discharge
•         Early identification of patients’ post discharge needs allows for appropriate referrals and supports to be organised prior to discharge
•         Patients and carers value participation in the discharge planning process to facilitate considered, organised and timely discharge from hospital
•         The timely presentation, delivery, language used, format and relevancy of information impacts how patients and carers manage their discharge

The research findings indicate that patients and carers are not satisfied with their hospital discharge planning after major trauma.  The discussion proposes and develops the following and other, implications for practice. 

•         Patients and carers should receive education on coping skills, such as hope and resilience, and have access to peer support to assist to them adjust to the effects of their injuries and reintegrate into the community. 
•         Patients may benefit from having a trauma pathway healthcare professional to provide support and advocacy services throughout their hospital admission and after discharge.
•         Patients and carers should be invited to participate in shared decision-making in regard to their healthcare.  This empowers patients and carers to direct their care and ensures that care remains relevant to the individual. 

·        Healthcare professionals should be trained in health literacy skills to enable them to be sensitive towards and understand the information needs and learning style of patients and carers.  This should influence the provision of individualised discharge information that is presented in an easily accessible format for patients and carers.

 I have submitted a manuscript to Disability and Rehabilitation and am awaiting a decision on whether it will be accepted for publication.
Jeanette Collins

In this newsletter, I am pleased to inform all our members that the ASSBI 2023-25 Strategic Plan document has been finalised and was endorsed by the committee at its last meeting. Importantly, this Strategic Plan is, in fact, the first of ASSBI’s 40+ years history. It was an opportunity to document the excellent work that our Society has been doing in its 40 years+ of existence but also to reflect on its goals and aspirations and shape its future in the coming decade.

Initiated by current Past-President Robyn Tate, the drafting of this Plan was 18 months in the making and went through a series of consultations with members, focus groups, and workshops. This document outlines four main strategic priorities: multidisciplinarity, translation of research into practice, strengthen the voice of lived experience, and build long-term sustainability.

As many of you know, these strategies are not entirely new; indeed, ASSBI has for many years being committed to these aspects that underpin relevant and meaningful clinical practice and research, in an inclusive approach. ASSBI, at its core, has an ethos of being an inclusive and multidisciplinary society, that prides itself in supporting and promoting research that makes a difference to the wellbeing of our clinical populations with brain impairment. One important challenge, however, is how to increase further the visibility and participation of people with lived experience in our activities. Undoubtedly, whilst primarily a society for professionals working in the field of brain impairment, our activities must be informed by what our ‘client base’ is, that is individuals with brain impairment, their carers, as well as their family members and friends. And in that respect, we believe that we can do better.

Another challenge is with the long-term sustainability of the Society. The past 2 years have shown us the importance of being prepared and ready to respond rapidly to changes in the world. ASSBI has done extremely well under difficult circumstances in the past two and a half years, and has responded in nimble and flexible ways, as shown by how quickly we were able to pivot to online delivery of conferences, workshops, etc. Some of our activities, however, have suffered and we need to look ahead and ensure that we can proof ourselves against future threats.

All in all, I cannot underscore enough the importance of this document. It will help steer the society over the next three years and ensure that it grows and remains relevant to its members in this rapidly changing world. Six main projects are articulated around the four strategic priorities, three of which will tackled during Year 1 of the Plan. With that in mind, committees have been set up to start working on these projects. You will hear more about these committees in the coming months.

In addition to Robyn, I would like to thank Barbra Zupan, Dana Wong, and Jacinta Douglas, for their contribution to this process, and Regina Hill from Effective Consulting our external consultant for guiding our discussions during its inception. The Strategic Plan is now available on the website. This link goes directly to the Plan: https://assbi.com.au/resources/Documents/ASSBI%20Strategic%20Plan.pdf.

Until next time, stay well and stay safe.

Olivier Piguet, President, ASSBI

I am writing this column fresh out of our 45^th ASSBI Brain Impairment annual conference. Nominally held in Perth, the conference took place online due to uncertain COVID-19 related restrictions in Western Australia, limiting travel and gatherings of large crowds. But what a conference this was! The meeting was a resounding success, and I would like to congratulate the conference organising committee led by Janet Wagland and Michelle Kelly and supported by Margaret Eagers and MERS Events. The program that they put together was of the highest calibre with keynote addresses by international (Lynne Turner-Stokes, UK; Mathilde Chevignard, France) and national (Bruce Powell, Perth; Bronwyn Hemsley, Sydney; Beth Armstrong and Juli Coffin, Perth) speakers. As usual, a series of workshops were held on Day 1 covering topics such as Social media in professional practice, Goal setting in rehabilitation, Care following brain injury for Aboriginal Australians. Following a Welcome to Country by Kerri Colegate, Day 2 started in earnest with a debate on whether machines are the future in diagnosing and looking after people with brain impairment. Two teams, one in favour, the other opposed to the proposition debated fiercely but with great humour and outlined their position, and often finding common grounds. However, there could be only one winner and, in the end, the against team was declared winner by the audience by a fairly convincing margin! Many great papers were presented over the two days covering a wide range of topics, including dementia, rehabilitation, vocation, behaviour and emotion, language to name a few, as well as ‘how to sessions’ on behaviour support and NDIS, use of technology, and many others. In addition to the breadth and quality of science presented, what struck me was that most of the research was, explicitly or not, framed around a person-centred approach. Indeed, the philosophy underlying the majority of the projects presented was to make a difference in the life of people living with a brain injury. The conference concluded with its prize ceremony recognising the work by students. The Kevin Walsh Award went to Jeanette Collins for best presentations by a Master’s student, the Luria Award to Jasvinder Sekhon for best presentation by a PhD student, and the travel award to Vanessa Sharp for outstanding student abstract. Two additional prizes were awarded. First Meaghan MCAllister and the Healing Right Way trial group were the winner of Mindlink Brightwater Award for best interdisciplinary research project in Western Australia. And finally, Suzanne Barker-Collo was awarded the Tate-Douglas prize, for her Brain Impairment article, which was voted best paper of 2021 by the Editorial Board of the journal.

I would also convey my sincere gratitude to Michelle and Janet, who took on the task to organise the meeting, for battling two years of uncertain time and getting this meeting over the line. Indeed, many of you may not know that this meeting was scheduled to take place in 2020, with most of the planning work done in 2019. By the time COVID-19 hit and Australia went into lockdown in early 2020, the organising committee had a full program of international and national speakers lined up. However, rather than throwing the towel, Janet and Michelle took up the challenge and worked on the 2022 conference, hoping for a face-to-face meeting, Unfortunately, the face-to-face meeting was not meant to be but the conference was nevertheless a great success. 

As current ASSBI President, I must confess that I was disappointed by not being able to go to Perth and attend the meeting in person: catch up with old friends and colleagues and meet new ones. Indeed, a conference is so much more than listen to presentations and workshops. It is about connecting and being part of a community: individuals who share interests, passions, and where novel ideas percolate, are discussed, with many evolving into research projects, collaborations for interventions, etc… Often these discussions occur on the sideline, between sessions or around a drink after the last session of the afternoon or during the conference dinner.

Not surprisingly, this is made much more difficult when the conference is held virtually. Nevertheless, social gatherings were held in several locations, including Perth, Sydney, Melbourne, either before or at the end of the conference, where delegates met together for a social occasion and share stories about ASSBI, the conference or other topics. For me, this demonstrates the collegiality of ASSBI, making it much more than simply a group of people interested in brain impairment.

Another advantage of the virtual meeting is the flexibility. With multiple parallel sessions, the choice is wide and therefore the decision to attend one or another session rather difficult. The virtual format, however, solves this problem, in that all presentations from the keynote addresses, invited speakers, paper sessions and data blitzes were recorded and are available to view at your leisure for the next 90 days. So you can listen to the talks that you missed or watch again the ones you enjoyed: what a treat!

Until next time, stay well and stay safe

Olivier Piguet, President, ASSBI

Douglas and Tate Prize

The winner of the Douglas and Tate Prize for best paper published in Brain Impairment in 2021 was Suzanne Barker-Collo for the following paper:

Barker-Collo, S., Theadom, A., Jones, K., Starkey, N., Fernando, K., Kahan, M., Prah, P., & Feigin, V. (2021). Three methods for examining trajectories in the neuropsychological performance across the first 4 years after mild traumatic brain injury. Brain Impairment, 22, 20-33.

The Douglas and Tate Prize was created in recognition of the work of founding editors Jacinta Douglas and Robyn Tate. The winner is selected each year by a panel of Editorial Board members, and receives a cash prize donated by our publisher Cambridge University Press.

More on the journal in the Newsletter

Moving into new housing designed for people with disability: preliminary evaluation of outcomes

Jacinta Douglas, Dianne Winkler, Stacey Oliver, Stephanie Liddicoat and Kate D’Cruz

Disability and Rehabilitation, https://doi.org/10.1080/09638288.2022.2060343

What the study is about 

Adequate housing is universally viewed as one of the most basic human needs. Our home and living arrangements have a strong influence on our quality of life. Yet a substantial number of people with acquired neurological disabilities and complex needs (e.g., brain injury, spinal cord injury, multiple sclerosis) are denied access to their own home and have limited choice in housing and living arrangements. In this study our aim was to investigate the change in individual outcomes for people with disability and complex needs who move into newly built, individualised apartments in the community.

What we did

We interviewed 15 adults with acquired neurological disability (aged 18–65 years)  and completed three primary self-report outcome measures at two time-points (time 1: pre-move and time 2: 6–24 months post-move). Pre-move living arrangements included group homes, residential aged care, private rentals, and living with parents. Post-move living arrangements were individualised apartments built for people with disability. Health, wellbeing, community integration, and support needs were compared across pre- and post-move timepoints.

What we found

Despite the small and heterogeneous sample in this preliminary study, statistically significant improvements consistent with large positive effects were demonstrated in the wellbeing, and community integration of tenants at post-move compared with pre-move. A positive trend commensurate with a large effect was also evident on health post-move. Scores on these three measures improved with increasing time post move. Daily support hours for the group of 15 participants showed an overall reduction. Pre-move the average support hours per participant was 19 h per day; at post-move the average support hours per participant was 16.6 h per day (an average decrease of 2.4 support hours per participant per day). These results demonstrate the positive personal outcomes that can be experienced by people with acquired disability when they have the opportunity to move into individualised housing that reflects their will and preferences. 

In their own words: Empowering people to tell their story after traumatic brain injury - REGISTER

Synopsis:

This webinar will be a fun and lively presentation from a group of people who will share their experiences of having a traumatic brain injury and their unique perspectives on their rehabilitation journeys. The speakers have all been supported to develop their stories as part of their speech pathology programmes and find this to be a very rewarding journey both for their own recovery but also through the valuable contribution they make to others.

Speech pathologist, Dr Melanie Moses will also share her insights into the value of storytelling as a therapy tool. 

Key Learnings:

• 1.     Develop unique insights into lived experience of people with traumatic brain injury and ways to best to engage them in their rehabilitation journey.
• 2.     Understand ways in which supporting clients to tell their story may assist them to develop a range of cognitive-communication and psychosocial skills.