Forging new futures in dementia research

In today’s blog today, Al Innes discusses the recent ECRED ‘Forging New Futures in Dementia’ Conference, and looks at some of the challenges facing Early Career Researchers in this arena.

For those undertaking a social science PhD (or professional doctorate), navigating the post-doc research landscape and finding a job can be a fairly daunting prospect. For those doing the same in a dementia-related research area, there are unique challenges, with 70% of dementia-related PhDs leaving the field within 4 years, according to RAND Europe.  For every 5 researchers working on cancer there is only 1 looking at dementia. This is despite the fact that dementia is estimated to cost the UK economy somewhere in the region of £26bn.

With this in mind, I was extremely pleased last year to be approached about giving a talk to a gathering of around 50 PhDs (some newly-minted, some still studying) at a 2-day conference designed to showcase their work; build dialogue with experts in the funding arena; policymakers, and potential future employers. The event took place last week (26th and 27th April), and over the course of the two days there were a number of presentations and conversations designed to equip early career researchers with the skills, the attitude and the beginnings of a network to enable them to navigate and influence the post-doc landscape with confidence.

What is the dementia social science research landscape?

The Conference opened with the question ‘What is the dementia social science research landscape?’ Agnes Houston MBE opened with a keynote speech on ‘Involving People With Dementia (PwD) in Research. Agnes was diagnosed in 2006 with Early age-Early stage Dementia of the Alzheimer Type, at the age of 57. She is currently board member of Dementia Alliance International, was awarded a Churchill Fellowship in 2016, and in 2012 she was elected vice chair of the European working group of People With Dementia (PwD). In an inspiring address, she conveyed her own vision for a research environment that was able to harness collaboration with PwD in order to create sustainable and impactful research projects.

I presented an overview of the current funding landscape for early career researchers, and this was followed by a panel discussion looking at potential avenues for employment, changes in the policy landscape and the need for greater public engagement and understanding of the challenges (and economic costs) of dementia. Dementia is one of the most pressing issues of our times, yet despite this UK dementia research charities funded approximately £23m of research in 2015/16, compared to £310m of charity research funding for cancer.  If this disparity continues the implications upon opportunities for researchers, particularly those just starting out, will be severe.

How do researchers influence the dementia research landscape?

The discussion then moved on to ‘How do researchers influence the dementia research landscape?’ The panel session was chaired by Mary Marshall (Hon. Professor at the University of Edinburgh and Professor Emeritus at the University of Stirling) and she was joined on the panel by Richard Lyle MSP, Becca Gatherum (Policy & Research Manager, Scottish Care), Jim Pearson (Director of Policy and Research, Alzheimer Scotland), Dr Angela Kydd (Associate Professor, School of Health and Social Care, Edinburgh Napier University), David Berry (Dementia Policy Lead, Scottish Government), Heather Edwards (AHP Consultant, Improvement Support Team, Care Inspectorate), and Professor Alex McMahon from NHS Lothian.

In an excellent 5-minute pitch Angela Kydd spoke about Edinburgh Napier’s Ageing Network and the importance of the transferable skills that they develop in their PhD students. Alex McMahon also gave an inspiring summary of NHS Lothian success in implementing person-centred approaches in dementia care environments making a real difference to people, families and nurses. The afternoon also saw Professor Brendan McCormack from Queen Margaret University lead a session focused on the use of arts and creativity in healthcare research and development.

How do dementia researchers navigate the landscape successfully?

Day Two was focused on the question of ‘How do dementia researchers navigate the landscape successfully?’ It opened with Rob Thomas, from Scottish Care, giving a carers’ perspective on caring with people with dementia. Rob made the salient point that dementia is a ‘shared condition’, expressing the feeling that if you have dementia you experience dementia, but also as a carer you experience dementia. In this scenario is conducting research on dementia also a shared experience?

Professor Charlotte Clarke followed with a keynote on the ‘Road to Success’. Professor Clarke spoke eloquently about being pragmatic, flexible and not worrying about being in a mess when building a career in research.  “It’s fine to be uncomfortable, it’s fine to be in a mess”, she explained, “You have to not know, in order to learn it’s okay to say I don’t know.” The afternoon saw conference participants take part in an a facilitated discussion using an appreciative inquiry methodology in order to answer the questions posed over the course of the two days, and create recommendations and actions for the future.

It was an incredibly informative and engaging couple of days. Many of the conversations centred around learning that, as a researcher, you are not alone. Your work does not live in a silo, and as an Early Career academic it is vital that you build dialogue with your peers. Don’t be afraid of getting in touch with senior colleagues and potential stakeholders to help your research grow. The challenge and opportunity now is to harness this collective spirit from the conference; build on the knowledge that was shared, and connect these networks to make new research happen for researchers whose careers have just begun.

If you are a researcher at the University of Edinburgh looking to do research in the area of dementia then we’d love to hear from you about the next step in your research.

Al Innes is Research Development Officer for the College of Arts, Humanities and Social Sciences within the Research Support Office.

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