My experiencie in a 3-day Interdem Academy Masterclass in London

I joined INTERDEM a few years ago on the advice of my second supervisor. Since then I have been to two absolutely wonderful INTERDEM masterclasses. The first one was in the first year of my PhD and was all about multi-disciplinary care for dementia. I am still in touch with some of the people I met on the first course I did, and have even collaborated on a publication with one of them. We were all health professionals who had undertaken a PhD (two nurses, two psychologists and myself- a speech and language therapist). We regularly met for coffees (about 3 times a year) and kept in touch providing support on our PhD journeys in dementia.

Consequently I leapt at the idea of attending another such class. Additionally, this masterclass was advertised as focusing on “skills and career development for late-stage PhD’s and early post-docs”. This seemed quite ideal given I am now in the final year of my PhD and looking forward to the next steps of my career. This three-day masterclass took place in London from Wednesday 15th May to Friday 17th May and included a fantastic range of presentations. Perfect.

The first day focused on Palliative Care, End of Life Decision Making and Advance Care Planning. The speakers came from Brussels- Professor Lieve Van den Block and Dr Lara Pivodic do research on Aging and Palliative care, whilst Professor Sigrid Sterckx is a Professor of Ethics and Political and Social Philosophy. These talks were particular fascinating for me, having a background as a health professional in England. The first speakers provided a historical perspective around how palliative care has been ‘imported’ from cancer care into dementia care, which means many of the care models don’t entirely fit. These were really interactive sessions, where the group became involved in considering the ethical aspects of advance decision making, death and dying. Decision making capacity is a hugely relevant issue in the UK, and interestingly there are some subtle differences in the legislation between the England and Wales and Brussels. Recently a new NICE guideline was published here in the UK, providing health professionals with specific guidance on their role around decision making and mental capacity, including issues related to advance decisions. As a member of the guideline committee myself, I was fascinated by the lack of research evidence in this area and more poignantly for me as a dementia researcher, the lack of research evidence around people with dementia. These sessions provided a wonderful forum to have a discussion with people from different countries and professional and research backgrounds on this really interesting topic. One part of this was a discussion that encouraged us to consider our own future care too, posing questions such as “What makes your life meaningful?”, “What do you value most about your mental and physical health?” “Who would you like to speak on your behalf if you would not be able to?”

The second day of the masterclass included a real variety of things such as patient and public involvement. This was another refreshing reminder of the importance of keeping people with dementia at the centre of the research you are doing. Dr Elspeth Mathie, a researcher in Public Health, encouraged us to consider all the different ways that people can work alongside researchers on research projects, as co-researchers. Dr Mathie challenged us to ensure that this isn’t a token effort in the future work we do, but that it is embedded right from the design stage.

Professor Frances Bunn, Dr Jennifer Lynch and Dr Melanie Handley led a fascinating talk on realist review methods in the afternoon. This was a really exciting reminder to me of all the things I have yet to learn about research methods. I remember starting my PhD as a mature student, feeling somewhat concerned that after years of working as a health professional I was back at the bottom of the pack-not even a junior researcher, just a tiny PhD student. I then realised how exciting it is to learn so much. Being in a research environment is such an exciting place. I am constantly overwhelmed by the new and exciting things I learn, such as how to do a realist review. This is another excellent weapon in my research toolkit, thanks to this fascinating talk.

On the afternoon of the second day Dr Aida Suarez Gonzalez and Dr Joshua Stott talked to us about the exciting new project they are working on to develop technology (websites) for people affected by rare dementia. I have some insight into some of the work being done on this project already, and I felt so proud to listen to these plans being shared with a room full of researchers from all over the world. And the project is only in its infancy at this stage. A 5 year ESRC-NIHR funded project to investigate the value of support groups, including online interventions. Surely this is the future of much of the healthcare we will be providing and we need to be doing the research to make sure it meets the needs of the people it has been designed for. How exciting.

The final morning of the INTERDEM masterclass was focused on entrepreneurship. Drs Yeori Dassen and Joris Wiersinga both described themselves as entrepreneurs. Both have set up companies, developed products and start-ups and provided a completely and utterly different perspective to the masterclass. There had also been a talk on business planning the day before by a fascinating speaker- Candelas Leal, an economist. Bringing together people from such different backgrounds to provide fresh sets of eyes on research and health care for people with dementia proved a fascinating experience. Funding bodies who support research are of course focused on money, investment and business in some way. This is not traditionally anything I have had to consider in my previous roles to date, and it was ever so interesting.

Finally I cannot write about the INTERDEM masterclass without referring to the presentations which also focused on professional development (James Picket and Marco Blum from Alzheimer’s society UK and Netherlands respectively), management of research networks (Dr Deborah Oliveira) and supervisory skills (Professor Martin Orrell and Professor Frances Bunn). These were all really enjoyable reminders of skills we are and have developed and that we may need to continue to reflect on and develop as we continue in our research careers.

I went away from this Masterclass feeling energised and enthused. It reminded me of why I pursued a career in dementia research in the first place, and of course made me consider what I might focus on in the future (once I have finished writing up my currently mammoth thesis!).

I look forward to many more INTERDEM classes, events and meetings as I continue in my research career (after I have submitted that thesis…).

 Anna Volkmer from UCL (a.volkmer.15@ucl.ac.uk)