Guest Blog – from down under: Attending the International Conference on Frontotemporal Dementias 2018 in Sydney

I recently attended and presented at the International Conference on Frontotemporal Dementias (hence forth referred to as ICFTD in this blog just because the full title is such an enormous tongue twisting mouthful). There are pros and cons to attending conferences – they can be expensive, time consuming and tiring, but also inspiring, allow you to spread the word about your own work and ever so interesting hearing about other people’s work. I do also enjoy conferences, and the ICFTD was no exception. Thus, I have decided to cut straight to the good stuff and simply bullet point 10 great things about this years ICFTD:

• I attended the ICFTD conference in Munich 2 years ago- it’s a biennial conference. I had just finished the first year of my PhD and was getting my head around research methods and spending time immersing myself in the research literature. I only attended one day of the conference and specifically attended a bunch of talks on genetics and a little on language. I found much of the research being presented quite complex and difficult to understood. This time I attended the full four days of the conference and pre-conference workshops. I attended a number of talks on genetics and trials and realised that I understood a whole lot more than I had done last time! It was quite exciting to realise that I had developed my understanding of research methods, my ability to follow technical presentations and my knowledge of FTD and PPA itself. Rather satisfying.

• Having said that I also learned heaps more. The work that is being done in diagnosis, identifying genetic links and identifying potential interventions across multinational research sites in phenomenal. I learnt about new measures being developed to diagnose earlier and monitor progress more efficiently. I learnt which genes are the focus of much of the genetic research. And I learnt about the complexity of research with people who are bilingual.

• The research is moving forward at an exciting and exponential rate. There may be a massive way to go yet, but nevertheless there seems to be significant momentum in the research work being done. Not only was there much discussion on the international collaborations between projects such as GENFI in Europe, ARTFL in the US and FRONTIER in Australia. There were also many many PhD students and early career researchers there. Apparently, the conference committee were overwhelmed with abstract applications this year (despite it being held in Sydney, Australia). This shouts of increased investment in research in this area- which in turn means an increase in the amount of research being done.

• I knew lots of people there- I couldn’t quite believe how many people I had a connection to. I felt part of the research community, fully embedded in the network. This also paid off- with many discussions on potential future collaborations I will be seriously exploring.

• I was invited to speak at the pre-conference workshop on managing Primary Progressive Aphasia. Myself and four others spoke on different aspects ranging from diagnosis, scripting therapies to group therapy and communication partner training (mine being the latter). I spoke for 45 mins- and people approached me afterwards to ask about the work. Not only SLTs but also neurologists. I also presented a poster at the scientific conference describing the development of the communication partner training I have refining and am currently piloting across 12 NHS sites.

• The conference was multidisciplinary – there were people from different clinical backgrounds including social work, nursing, speech and language therapy, medicine, psychology, occupational therapy to the bio-medical sciences. There was also a full day which included a carer conference stream. This meant we were all there, working together, with a common purpose. It is so useful to know what is happening in other related fields. Our patients are multidimensional and so the research and the care must be multidimensional.

• There was lots on therapy. There was a whole plenary session on language and interventions for these difficulties that arise in FTD and PPA! It was great – whilst there is no cure we must focus on providing the best possible care.

• Networking opportunities – I know I said I knew people, but really there were so many wonderful opportunities to mingle and meet new people. I went for dinner with people I knew or had just met on every evening of the conference. We made personal and professional connections and I feel confident that some of these will be long lasting.

• The ICFTD was in Sydney, Australia. Now this may seem like a long way away, and yes, it is. But I used to live and work as a speech and language therapist (speech pathologist) in Australia- Melbourne to be specific. So, this was the perfect excuse to go there. And take my husband, my two kids and my mum. And while we were at it stay with my sister (who has just moved there) and visit all our old friends. And of course, get a dose of sun in the middle of the bleak British winter!

Author

Anna Volkmer is a Speech and Language Therapist and NIHR Doctoral Research Fellow working in Language and Cognition, Department of Psychology and Language Sciences, University College London. Anna is researching Speech and language therapy interventions in language led dementia.

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