Blog – Researchers & Dementia Advocate Groups: What do we owe to each other?

©NBC The Good Place

The picture opening my blog may well be familiar to those who’ve already watched the popular Netflix show The Good Place. For the uninitiated, the girl sitting on the sofa is Eleanor Shellstrop; after passing away in some pretty vague circumstances (no spoiler alerts), Eleanor opens her eyes and finds herself in the heaven (well, kind of), much to her surprise. Deviating from how the story eventually unfolds in the series, I thought this would be an ideal allegoric image to start a blog which figuratively represents myself every morning just before I sit at my desk. Indeed, nearly 14 months into my PhD journey, I know that my day exploring the profundity of research involvement will land me with many more questions than answers. Against this backdrop, the underpinning of the aforementioned series helps me reinforce my oft-repeated point: I believe researchers and dementia advocates groups should collaborate not only in the interest of research itself but more importantly, in the interest of our cherished future research community.

Stepping into the arena

The above picture shows Chris Roberts and me at the Alzheimer’s Europe conference, which I had discussed in my previous blog. Chris is very well known for his passionate and dedicated research involvement activism within the UK and Europe at large. I started following him on Twitter several years ago but managed to meet him for the very first time at the latest Alzheimer’s Society conference in May. It was one of those momentous occasions where I decided to be brave. During one of the breaks, I introduced myself, briefly presented the aims of my study, and sought some feedback. He was rather magnanimous in his replies, giving me insightful advice along with his contact details, just in case. We met again at the Alzheimer’s Europe and had an informal chat just after that picture was taken. This time though, I decided not to remain in my typical ‘researcher’s zone’ and list all my findings to date; I chose to be myself and let him be whoever he wanted to be, no holds barred. Surprisingly, as I let my guards down, I could see us not playing any role that others or ourselves were expected to play. We were humans connected by the intersecting passion of meeting people’s needs and empowering them to express themselves in the best possible manner; two unrelated yet seamlessly interconnected humans committed to change the story of involvement in dementia research forever. Period.

So what?

I guess many of you might feel confused given that there is no clear linkage between that accidental (not really on my behalf) interaction with Chris and my introduction against the backdrop of a Netflix series. Bear with me, and everything will come clearer.

Putting things in context

More than a year ago, I embarked on my PhD journey with a single-minded objective: how best to involve people living with dementia and family carers in research. My EndNote library counts myriads of studies that focus on different facets of research involvement, methods and definitions juxtaposed with contradictory perspectives on its conduct and evaluation. Moreover, in the field of dementia research, the number of published resources reporting scenarios of researchers’ activities (involving both experts by knowledge and experience ruminating on the various challenges and/or discussing implications for future practice) is constantly on the rise. However, there is far less ‘published evidence’ about the underrated importance of building a trustworthy relationship, something which is fundamental to commencing any meaningful conversation about collaborative research. Why is that the case? Why should researchers and dementia advocate groups bother to build a relationship based on trust, respect and shared passion? Because we owe it to each other as human beings.

What do we owe to each other?

Me and Chris Roberts, vice-chair European Working Group People With Dementia and co-founder 3 Nation Dementia Working Group.

What we owe to each other is the question underpinning Professor T. M. Scanlon’s moral philosophy and inspiring the Netflix series mentioned at the start of this blog. Scanlon, who teaches natural religion, moral philosophy, and civil policy at the Harvard University, believes that people would automatically prioritise their social life as feeling a welcome, cohesive part of the community by adopting a moral behaviour. This belief initiates contractualism–a thought-provoking philosophical concept discussing the micro and macro societal obligations. In other words, by adopting Scanlon’s philosophical approach to morality as part of your daily commitment to research as researchers or members of any advocate dementia group, you would start questioning yourself what is it that makes an action right or wrong? How do we reach a consensus on such issues both individually and as contributing members of society? How can we justify one course of action over another to a fellow human being?

Discussing moral philosophy might seem out of context, possibly even surreal if I concede that I came up with it not because I had studied philosophy for six years, but because I watched a popular Netflix series. Nevertheless, I think that after two decades of research underscoring the incredible potential of an active collaboration between researchers and dementia advocate groups members, we’re all still stuck with the rudimentary why ignoring what makes it great, for whom, how and when (thanks @NRealists). If all of us could pause for a moment and take a breather from all the burdensome duties and responsibilities inflected by our respective roles within the research arena, perhaps we at least stand a better chance of following reasonable, human-centric principles that no one could reject; we would be able to practise equality without even questioning its existence. Put succinctly, we would act morally.

Extending the philosophical doctrine of Scanlon into research involvement practices may indeed seem daunting; however, there is a silver lining: it asks nothing more than what we do when we choose between right and wrong actions on a daily basis. Scanlon’s theory of moral action, which preserves a baseline of equality without asking anyone to be a saint, it may well be one of the keys to finding elusive answers to some of the most difficult questions life throws at us. Looking at research involvement practices with a philosophical/moral lens can help us gain a better understanding of the ideas we are acting on, and perhaps identify areas that we’ve been egregiously overlooking for a long time now. The message I wish to leave you all is:  yes, be a researcher, and be an activist/pioneer of dementia research involvement. However, before anything else, be a human being who recognises the need of forming emotionally nurturing relationships as a social animal and who cultivates ethical virtues that explain our duties to each other with kindness and empathy (Aristotle).

Author

Ester Bellavia is a Alzheimer’s Society funded, PhD candidate at Newcastle University. Currently conducting a research aiming to explore the role of Patient and Public Involvement in dementia research and explain how best to involve people living with dementia and family carers. A basketball player and fan, originally from Italy with a background in nursing both overseas and within the NHS, where she also completed an NIHR funded MA in Research Methods at the University of Nottingham.

Follow @Ester_Bellavia