The Citizenship and Dementia International Research Network – 2018 meeting in Berlin

Chris Russell, one of the ADS PhD students, recently travelled to Berlin to participate in the Citizenship and Dementia International Research Network Meeting of 2018. Here he reflects on his trip and provides his personal thoughts on the future.

Citizenship is a complex and diverse phenomenon. At heart it is about how society operates, in particular how individuals within society contribute to its function, and draw rights and protections as a result. It has always appealed to me because citizenship necessitates questioning unfairness and oppression, whilst at the same time exploring how opportunity can be promoted. People with dementia are facing constant injustices, and it is thus unsurprising and essential that notions of citizenship are applied in this context. Understanding has been refined and developed over the last few years with social citizenship emerging as particularly relevant, because it relates to the active participation by people with dementia in their own lives and wider community. Social citizenship is a lens through which I am viewing my PhD study, which explores how people with dementia engage in physical activity and sports post diagnosis, and how this influences their sense of them self.

Image saying 'we love Berlin'

In this context, the opportunity to join seven colleagues from the Citizenship and Dementia International Research Network in Berlin, at the start of December 2018, was one I was greatly looking forward to. The network has almost a hundred members from across the world, with backgrounds in the lived experience of dementia, academia and service provision.

The network aims to:

  • Promote and engage in international research which seeks to explore meanings and assumptions relating to citizenship when living with dementia and consider their implications for social life and social policy.
  • Undertake international comparisons on the meanings, practices and socio-legal and political contexts of citizenship within and across nations and promote academic, public and policy debate about promoting meaningful citizenship.
  • Engage in collaborative high-quality research; thereby informing and contributing to debates on citizenship and inclusion when living with dementia.

Thus, I gathered with colleagues from five different nations, over two days, and listened carefully to the thoughts and reflections of these more experienced researchers. I engaged in the discussion, advancing and testing ideas emerging from my own studies. The relational aspect of citizenship emerged as a topic with significance, in particular – how do the relationships people with dementia have influence their ability to enact citizenship? Relationships identified as especially important included those with family supporters/caregivers, and with professional staff. My study examines both within the context of people with dementia engaging with physical activity within leisure and fitness centres, thus my hope is that I can bring fresh insight here.

The discussions were also provocative exploring, for example, the relationships people with dementia have with themselves as life with a diagnosis unfolds. My research uses ethnographic methods, enabling me to get to know each participant well over an extended period. This has assisted me to enquire into matters relevant to self-identity.

The meeting addressed what was referred to by some of my colleagues as the potential ‘dark side’ of relational citizenship. For example, how much genuine power do people with dementia hold in order to influence relationships so that their citizenship is realised? Additionally, if people with dementia are physically unwell or less able to contribute verbally are assumptions simply just made by powerful others about their aspirations for their community life, and what are the implications of this?

Christmas Market

The visit provided the opportunity to hear the perspectives of colleagues from five different countries, and engage with these in depth. I returned to my PhD studies with new and interesting perspectives to consider, and confidence strengthened by the fact that colleagues had treated my ideas respectfully and constructively. I would like to continue to engage actively with the Network. With the United Kingdom’s apparent imminent exit from the European Union such occasions might become rarer. I hope not. Citizenship must be rooted in listening to the experience of others and using that to refine and enhance understanding about one’s own place in the world, with the consequent opportunities to make positive change close to home. Cleaving away prospects for this with our nearest neighbours seems a regressive step.

Painted bear statue

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