In mid-October 2022 Alzheimer Europe, an umbrella organisation of 41 national Alzheimer’s associations from 37 European countries, held their annual conference, for the first time in two years. The conference, which took place in Bucharest, Romania for the second time, was in person and on-line and brought together people, professionals, and institutions (government and non-government alike) around a shared mission to “change perceptions, policy, and practice in order to improve the lives of people affected by dementia”.
Association for Dementia Studies duo Dr Shirley Evans and PhD student Nathan Stephens attended, as well as having the opportunity to present their work at the conference. In this week’s blog they provide a whistle-stop summary of their key highlights and reflections of what was a packed programme.
Before the conference ‘officially’ began INTERDEM, the international network of researchers and practitioners to promote research and spreading of psycho-social interventions in dementia, held their annual meeting.
A series of short presentations from INTERDEM members highlighted the breadth of work facilitated through the network that is promoting high-quality dementia care through international collaboration. Be sure to check out their web page for past and present projects and publications.
Calls went out for delegates to support numerous existing taskforces, including assistive technology, social health, methodology, primary prevention, and new ones like inequalities and workforce. There was real sense that the INTERDEM meeting offers a space in which the seeds of social change can be sewn, and as one member warned “you may return from the meet with more work than when you left”.
The work of INTERDEM members was presented in break-out rooms, including by Nathan and Shirley who presented separately (and in different rooms) on their work with Meeting Centres.
Nathan shared some early findings of his PhD research around the costs and benefits of scaling up community-based interventions for people affected by dementia. If you would like to know more check out one of our earlier blogs, but in summary Nathan highlighted the many individual and societal benefits of implementing community support at scale in a more systematic way, and also areas that could be improved to create more value.
Shirley presented on the essential features of Meeting Centres – development of the UK criteria for community support for people affected by dementia. Shirley spoke about how the essential features were examined within a concept analysis framework, which combines both static and evolutionary methods, enabling multiple stakeholder groups to be included in the process in an iterative manner.
Eleven essential features were developed, providing a conceptual model of the UK Meeting Centres. The underpinning rationale is sufficiently flexible to enable community-based development, while at the same time providing a robust platform upon which to build the evidence base. Shirley acknowledged Professor Rose-Marie Droes for initiating Meeting Centres and also Professor Dawn Brooker for leading the Association for Dementia Studies and the initial implementation of Meeting Centres in the UK.
Shirley also presented alongside Graham Galloway from Kirrie Connections Meeting Centre and Ron Coleman from Deepness Radio on national and regional approaches to implementation and development of Meeting Centres in the UK. Significant national and regional developments have taken place over the last three years including in Worcestershire, England led by the Association for Dementia Studies, in Scotland led by Kirrie Connections and in Powys, Wales led by Dementia Matters in Powys. This has been driven by different policy decisions and funding opportunities across the three nations. In addition, the involvement of people affected by dementia is of paramount importance. As Ron explained, in Scotland this is being driven forward with a strategy board made up of a third people living with dementia, a third family carers and a third other interested parties.
No conference is complete without a punchy theme, and this year it was ‘building bridges’, coined in light of the global challenges presented by the COVID-19 pandemic and wider geo-political issues such as the war in Ukraine, a neighbour of Romania. Many, many, and many more bridge-based analogies and puns were made during the three days, however one which received a hearty applause (for all the wrong reasons) was Jan Steyaert’s ‘truss bridge’ reference to the, then, UK PM Liz Truss. Suggesting there was still some structural work to be done on the design of the truss bridge, and lo and behold, they were right.
Away from witty analogies of bridges, dementia, and UK politics, there were some hugely insightful and serious sessions. We’ve picked out just two, however recordings of all the sessions can be accessed via the Alzheimer Europe website.
Applying an intersectionality lens in dementia care research
Chaired by Martina Roes, the session presented results from a number of research projects that use intersectionality to understand more about racial discrimination of Turkish caregivers and the communication needs of migrant carers, for example. Intersectionality has been defined as “a concept that seeks to explore how social locations and identities converge to create conditions of inequality and privilege that intersect to result in more or less social capital and privilege” (Roes et al., 2022). Support and use of the intersectionality lens has burgeoned in recent times as inequalities and the diversity of populations has increased.
The session concluded with an honest account of the challenges of applying intersectionality in the context of dementia by Saloua Berdai Chaouni. They suggested that by appreciating, holistically, the social categories and power structures that shape people’s lived experience and research, intersectionality can be used as a framework to capture the complexity of the dementia care relationship and go beyond culturally sensitive to reduce inequalities.
Building bridges, our voices, our lives
The Alzheimer Europe working group of people with dementia hosted a session in which the chair and all speakers were, rightly, people living with dementia. Perhaps unsurprising, this was hugely popular and attendance was well above maximum capacity. Chair Chris Roberts (UK) introduced speakers who, one by one, gave extremely moving, charismatic, and motivational accounts of their lived experience.
Angela Pototschnigg (Austria) and Kevin Quaid (Ireland) spoke about both public- and self-stigma, and the need to do more to improve awareness among the public and professionals and remove the taboo of dementia in our communities and social networks.
Under the Equalities Act receiving a diagnosis of dementia doesn’t mean you have to leave your job, yet many people are asked to leave their workplace following a diagnosis. Eral Jonsdottir (Iceland) shared their experience of this complex phenomenon and the importance of work to foster a sense of citizenship, purpose, and normality, not just in people living with dementia, but people full stop.
Other speakers included Nigel Hullah (UK) who highlighted the worth of co-production to improve our services and understanding how we should develop new ones. Co-production explains a working structure and process whereby people with lived experience work alongside researchers and practitioners.
Chris ended by introducing two new members of the working group, and in four simple words, “don’t they look normal”, emphasised the underpinning narrative of the session: life shouldn’t, and doesn’t, end when you receive a diagnosis of dementia.
Roes, M., Laporte Uribe, F., Peters-Nehrenheim, V. et al. Intersectionality and its relevance for research in dementia care of people with a migration background. Z Gerontol Geriat 55, 287–291 (2022). https://doi.org/10.1007/s00391-022-02058-y
Thanks to Nathan and Shirley for giving us an insight into the conference.