Working together to improve the lives of people with brain impairment

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

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. 

As I put together these Words from the President, my aim is to write this column without focusing (too much) on the dreaded ‘C’ word. In doing so, I hope that you will indulge me as I share my (slightly meandering) thoughts with you.

I have been thinking a fair bit about communication in the digital age in recent times and its impact on our social interactions. A phenomenal change that has happened in less than 25 years. Indeed, penetration of digital technology is such that internet/mobile technology is now present in > 90% of households in developed and developing countries. With it comes a fast connection with the world and access to information like never before, through newsfeeds, social media, websites, search engines, resulting in a continuous flow of information and news cycle. Long gone is waiting for the 7 o’clock evening news bulletin for an update of the whole day of local and international news. Now, we can be become aware of an event almost in real time. One unintended consequence of this deep technology is news fatigue and a feeling of being overwhelmed, finding difficult to digest and make sense of this information, and have an informed opinion. Another aspect, which I will not discuss here, is although quantity and access have increased, quality has suffered. It is becoming increasing difficult to ascertain the accuracy of some news items that we come across. As Bruce ‘the Boss’ Springsteen already sang back in 1992: ’57 channels (and nothin’ on’)!

The resulting paradox of this connected world is the tendency to tune out, and the risk of moving from headline to headline and, in doing so, losing sight of the content and its meaning. I’ll give you one example to illustrate this point - and this is where I need to talk about COVID-19 for a minute. Currently, the good news is that, although still in their thousands, the numbers of individuals affected by the virus is slowly coming down. The tragic news, however, is that in NSW between 20 and 30 people are dying every day because of the virus! I’ll repeat: in NSW between 20-30 people will lose their life to this virus daily. Because these numbers are repeated day after day, we read them and not uncommonly fail to appreciate their true meaning. Behind these numbers are 20-30 individual stories of sadness, grief and loss every day, of individuals, each with their own life, partners, children, parents, friends who have died prematurely. This is compounded by the fact that this information is no longer deemed worthy of front page news, but is now given a minimum space. For me, this exemplifies one of the negative aspects of constant information exchange, focusing on little things that grab one’s attention, but at the same time diluting the impact of critical messages. As Marshall McLuhan stated in 1964 in his book Understanding Media, ‘the medium is the message’. In other words, how information is transmitted becomes more important than the message itself.

What has this got to do with ASSBI you may ask? Importantly, this behaviour illustrates the brain’s limited capacity to process and filter large amounts of information successfully and the tendency to categorise information rapidly and coarsely (‘black or white’, ‘Labor or Liberal’) rather than using fine-grain categories. A capacity that can be further reduced following a brain injury. Another consequence is the impact of digital technology on mental and cognitive health, with a documented worsening in anxiety, stress, and fatigue associated with an increase in use of these tools. As clinicians working and interacting with individuals with vulnerable brains, we need to be aware of these effects on ourselves and others, and the need to take these into account in the management of our clients. As such, I highly recommend some regular ‘digital detox’ (for a lack of a better label): Turn off Twitter, close your computer, read a book, go for a walk or a coffee with a friend, and take the time to truly connect. Having done exactly that over the Christmas, I feel ready to tackle whatever 2022 will throw at me.

Please give it a try: Your brain will thank you for it! 

Olivier Piguet, President

If you wish to nominate for as position on the  ASSBI committee, Secretary or Treasurer you need to be a financial member of ASSBI, complete a nomination form, get your nomination seconded by another ASSBI member and then return (via email) to Margaret. Applications are open until 15th March and will be ratified at the AGM in Perth on 6th May. We look forward to lots of nominations.

‘Nobody told me they’d be days like these; Strange days indeed, most peculiar Mama!’ (Nobody told me, John Lennon). As I write these words, over half of the Australian population is living under various lockdown measures: Sydney is entering its 8^th week of lockdown, now with additional NSW regions extending beyond the metropolitan area, up to the Queensland and Victoria borders. Melbourne, Adelaide, Brisbane, Perth and even the ACT have been, or are continuing to be affected. What started with isolated cases in June quickly escalated to impact the whole of Australia. There is little doubt that our closed international borders and our geographical location (an isolated, albeit large, island) have contributed to complacency regarding our approach to the management of this virus. In particular, our low vaccination rate has made Australia a prime target for the highly virulent COVID-19 Delta variant.

On behalf of the society, I would like to send my best wishes to all the families affected by COVID-19, be it for medical or economic reasons. In addition to the impact of the virus itself, numerous studies are clearly demonstrating that the uncertainty about the future caused by the pandemic, combined with the physical and social isolation is impacting on our mental as well as our physical wellbeing. My thoughts particularly go to all the most vulnerable segments of the population, including First Nation communities, homeless and socially isolated people, individuals with mental health or cognitive difficulties, rural and remote communities who are also battling climate change emergencies. 

As clinicians, carers, researchers, this pandemic is challenging us in ways not encountered before. With this challenge, however, comes opportunities. We now need to adapt to this new reality and be innovative in how we can provide services, and support individuals who need us, and also in how we can continue our research activities. One example is the recent 6^th Pacific Rim Conferences organised by ASSBI, together with the International Neuropsychological Society and the APS College of Clinical Neuropsychologists. Originally planned as a hybrid meeting, the organising committee led by Dana Wong, Travis Wearne and Kerryn Pike and supported by Margaret Eagers, made the decision to move to a fully online conference at very short notice. They were able to make the best of interactive communication and meeting technology. This flexible approach led to a resounding success with over 720 delegates attending the conference. What we lost in face-to-face interactions, we gained in flexibility and capacity to attend more sessions than would have been otherwise possible. My sincere thanks and congratulations to the organising committee for this tremendous achievement.

Undoubtedly, the road ahead is likely to be long. If anything, these recent weeks have clearly demonstrated that we are not different to the rest of the world and that the best way out of this will be through systematic and high-level vaccinations that must be made available to all. Despite this uncertain time, I remain hopeful that my next Words from the President will come to you from the other side of this lockdown. You may say I’m a dreamer, But I’m not the only one (Imagine, John Lennon).

In the meantime, stay safe, be kind to yourself and to others.

Olivier Piguet, President

Dear ASSBI & Student Community,

We are currently seeking expressions of interest from students who would like to become the national student coordinator for the Australasian Society for the Study of Brain Impairment (ASSBI) for the term of 2022 - 2023!

We encourage both undergraduate and graduate students from all universities across Australia and across all disciplines (e.g., Speech Pathology, Clinical Psychology, Neuropsychology, Occupational Therapy, Nursing, Medicine, Social Work) to apply. For more information go to the Student page or read the latest Newsletter

ASSBI social media has been extremely busy and fruitful over the past few months. We are excited to reported that Dr Lizzie Beadle has returned to her social media editor role after her maternity leave. She will be involved in ASSBI related matters at a reduced and transitional capacity over the next few months, but we are very excited to have her back on board - Travis is particularly thrilled! We missed you!

We had great social media outreach in the leadup to the 2021 conference. Our own posts from the ASSBI page had over 128.2 K impressions, which is more than our usual level of engagement across an entire year. From May 2021, we have procured 94 new followers, 5800 profile views and 494 mentions on Twitter!

The 2021 conference in June/July was particularly successful. The #headstogether2021 hashtag had over 2.33M impressions! We had 2145 tweet, 226 engaged participants, 21 average tweets per hour and an average of 9 tweets per participant across the entire conference – This is amazing! We would like to thank everyone for your participation and would like to thank our prolific tweeters. We would also like to thank the keynote speakers who provided short teaser videos of their presentations. This was a fantastic way to get everyone excited about the conference and it was very well received in the Twittersphere!

Welcome to the first issue of the Newsletter for 2021 and I hope that you are all settling well into year.  As my own term of office as President of ASSBI will come to a close at the AGM on 6 May 2021, this Newsletter will contain my final “Words” as President.  It has been an unexpectedly tumultuous two years, as we witnessed the devastating effects of natural disasters in Australia, New Zealand and elsewhere during 2019-2020, and then the terrible COVID-19 pandemic which continues to change how we live and how the world works.  My thoughts go out to any ASSBI member who has been personally affected by these events.

               Thanks to the efforts of the ASSBI Committee, we survived 2020 with a best-that-could-be-expected outcome.  Sadly, our annual conference scheduled for Perth in May 2020 had to be cancelled due to the pandemic. But there was a silver lining as our continuing education arm, led by Barbara Zupan, together with Skye McDonald and Margaret Eagers, sprang into action and mounted a stunning series of ASSBI 2020 Conference Bite Size webinars.  Using this model, another series of eight webinars is scheduled throughout the year for 2021 (see details in this Newsletter).  The silver lining has extended to how future conferences will be run.  To this effect, the 2021 conference, ASSBI’s 44^th annual conference, will be a fully hybrid event, with both face-to-face and online attendance possible.  The 2021 meeting, known as the 6^th Pacific Rim Conference, is a conjoint meeting of ASSBI, the International Neuropsychological Society, and the College of Clinical Neuropsychologists of the Australian Psychological Society, to be held in Melbourne.  Details of this not-to-be missed, multi-layered event are described in this Newsletter.  Registrations are now open.

               Over the course of the past four Newsletters, I have kept the membership informed about discussions of the ASSBI Committee regarding an external review of the Society, which would be its first in 43 years of operation.  In planning for this event we conducted a survey of the membership in May 2020 and I reported the results in the September issue of the Newsletter.  During 2020, a series of working parties with various members of the Committee advanced planning about the type of review that would best meet ASSBI’s needs.  The ultimate recommendation, which the Committee endorsed at its meeting on 28 January 2021, was that an initial necessary step would be to develop a strategic plan for ASSBI covering the next 2 to 5 years.  The Committee is currently in the process of collating the information that will be needed for this purpose.  We plan to engage an external facilitator to support the Committee with the strategic planning process and anticipate that this will occur in the second half of 2021.

In closing, it has been a pleasure and an honour to serve as President of this vibrant, multidisciplinary society over the past two years.  I am immensely proud of the high-quality, diverse and enduring achievements of ASSBI – indeed, I cannot think of another society of our size of membership which can compete with what we offer: an ever-evolving professional development programme over the past 45 years since the very first Brain Impairment workshop in 1976; its own official journal, Brain Impairment, established 20 years ago; the niche filled with ASSBI Resources of evidence-based tests and interventions for clinical practice; an expanding social media presence to raise awareness of brain impairment and ASSBI; student involvement with our Ambassador programme and prizes for outstanding student research and clinical innovations; together with other ad hoc activities.  I know that ASSBI will be in very good hands under the Presidency of Professor Olivier Piguet from May 2021.  I extend special thanks to the ASSBI committee, together with those working on the separate arm of ASSBI’s journal Brain Impairment, all of whom work so diligently behind the scenes to ensure that ASSBI runs like a well-oiled machine.  All this is facilitated by the superb and tireless efforts of ASSBI’s Executive Office, Margaret Eagers.  I look forward to seeing everyone at the (online) AGM on 6 May 2021.

               My very best wishes to you all,

Robyn Tate

President

ASSBI’S AGM via Zoom

Thursday 6^th May 1pm

Meeting ID: 893 9326 2120

Passcode: ASSBIAGM