Communicating with people with advanced dementia

There are 850,000 individuals with a diagnosis of dementia in the UK, many of whom are likely to progress to a state of advanced dementia. Professional care places a considerable strain on NHS resources and the distress that Alzheimer’s places on those living with the illness, their loved ones and professional caregivers cannot be underestimated. Much of this distress owes to the breakdown in speech-based communication that accompanies the illness.

People with advanced dementia who have lost the ability to speak are typically thought to have no communicative abilities or desire to interact and, as such, are typically excluded from the social world. Research by Dr Maggie Ellis and Professor Arlene Astell of the School of Psychology & Neuroscience has found that, despite a lack of speech, people with advanced dementia retain both the urge to interact and individual repertoires of non-verbal communicative capacities including sounds, movements, facial expressions and the capacity to imitate. These behaviours can be used by caregivers to re-engage individuals with advanced dementia in social interaction - an approach now known as 'Adaptive Interaction'. Organisations providing care for individuals with dementia have recognised the value of this evidence-based approach. For example, Alzheimer Scotland recommends Adaptive Interaction in a public document and the Alzheimer’s Society commissioned Dr Ellis to develop a training programme in the approach that is currently being rolled out to approximately 1000 volunteers across the UK.

While not eliminating Alzheimer’s disease, Adaptive Interaction supports the interpretation of behaviour as intentionally communicative and provides the means to engage with those living with advanced dementia. By supporting communication, Adaptive Interaction increases the wellbeing of those diagnosed and their family members and the job satisfaction of formal caregivers.

Research:
Astell, A. J., & Ellis, M. P. (2006). The social function ofimitation in severe dementia. Infant and Child Development, 15(3), 311-319.

Ellis, M. P., & Astell, A. J. (2011). Adaptive Interaction - a new approach to communicating with people with advanced dementia. Journal of Dementia Care, 19(3), 24-26.

Improving young people’s health and well-being

Adolescents make up about one sixth of the world's population, so policy and practice that improves the lives of young people is hugely beneficial now and for the future. In the current economic climate, most countries in Europe are faced with widening socioeconomic inequalities. It is key to our understanding of how these inequalities impact on young people’s health, to be able to track and measure the differences in health outcomes among children of deprived versus affluent families. The Family Affluence Scale (FAS) devised by Professor Candace Currie, of the School of Medicine, has been used to describe and quantify socioeconomic inequalities in health among young people across Europe and North America and these findings have been published by the World Health Organisation in their report ‘Social Determinants of Health and Wellbeing among Young People’. The indicator has been adapted within the context of the Health Behaviour in School-Aged Children (HBSC), a major international study which involves 43 countries across Europe and North America. FAS has been used to demonstrate that material deprivation impacts negatively on wide ranging aspect of adolescent well-being, including mental health, social relations, bullying, physical activity, eating habits and obesity. This evidence has been incorporated into policy events including WHO-HBSC Forums, bringing together policy makers and health programme developers from all over Europe to discuss the relevance of the findings for guiding their work. The Child and Adolescent Health Research Unit (CAHRU), established by Professor Candace Currie in 2000 and at the St Andrews since 2011, has been designated World Health Organisation (WHO) Collaborating Centre for International Child and Adolescent Health Policy.

Pacific Connections: Euro-American and Pacific knowledge exchange

The Min peoples of Papua New Guinea are renowned for their secret male initiation rituals. These knowledge-practices are a long-standing interpretative impasse known as the ‘Min Problem’ which has for over forty years defeated anthropologists. Dr Tony Crook, Director of the Centre for Pacific Studies (Department of Social Anthropology) found a solution to the ‘Min Problem’, which was the understanding of the meaning of knowledge itself. A key finding was that the Min peoples take the differentiation and incommensurability of “knowers” and what they know for granted, and work by accommodating diverse positions rather than attempting to homogenise them. In this way, they avoid offending and collapsing the relations through which knowledge is made effective (2009). Thus, for the Min peoples, 'knowledge' (kál) is a water-like substance in the skin (kal) that circulates between people, plants and food gardens (Anthropological Knowledge, Secrecy and Bolivip, Papua New Guinea: Exchanging Skin (British Academy/OUP)). Knowing this, the problem of conventional Euro-American encounters with Pacific lifeworlds was not simply a matter of cultural difference, but a completely different insight into knowledge exchange and understanding.

Prof. Christina Toren, of the Department of Social Anthropology, 

at a Pacific Connections event at the European Parliament.

Dr Crook has since trialled and developed a practical method, ‘Pacific Connections’, for knowledge-exchange that acknowledges the value of respecting and creating differentiation as the relational basis for meaningful dialogue with Pacific peoples. Dr Crook’s research has been presented at the Westminster and European Parliaments, and led to invitations to speak to UK Ministers, EU Commissioners and Pacific Ambassadors on Climate Change and Millennium Development Goals. Dr Crook is implementing a research-policy knowledge-exchange for the EU European External Action Service (EEAS) Pacific Division and the European Commission in order to enhance the effectiveness of the EU’s presence and support in the Pacific region.

The Fair Intellectual Club

Research by the School of English’s Professor Robert Crawford into the first of the great city rivalries of the English-speaking world – that of Edinburgh and Glasgow – has inspired a play by the comedian Lucy Porter.

The Fair Intellectual Club produced by Stellar Quines and directed by Marilyn Imrie, was received to critical acclaim at the Edinburgh Festival 2014, is currently touring the UK and will play at the Women of the World Festival at the Southbank Centre.

Lucy Porter began reading Professor Crawford’s On Glasgow and Edinburgh with the intention of getting some insights into the rivalry between the two cities but ended up being inspired to write her play on reading about The Fair Intellectual Club, founded in 1718. Porter was alerted to the significance of events of the 18th century’s intellectual revolution for women, and began imagining in detail what contemporary women would have made of the philosophical innovations of their time.

Professor Crawford’s book revises familiar histories of the Scottish Enlightenment that are exclusively about men, exploring women’s stories such as those represented in the records of the Fair Intellectual Club, and it is this aspect of the history of Edinburgh and Glasgow’s famous standoff that inspired Lucy Porter to write her play.

Professor Crawford said, ‘whereas clubs such as the Cape Club or the Select Society where philosophers including Adam Smith and David Hume met Edinburgh lawyers, poets and thinkers - were men-only adult drinking clubs, the Fair Intellectual Club was determinedly different. In Edinburgh and the rest of Scotland university students were teenagers of the same age as the Fair Intellectuals — but they were all male. The Fair Intellectuals would have known local students, but couldn’t have joined their university classes. It’s tempting to hear the word ‘Fair’ in the title of The Fair Intellectual Club not just as a reference to the ‘fair’ sex, but also as a reproach to the unfairness of intellectual life in Edinburgh and elsewhere. [Stellar Quines Theatre Company]

The Fair Intellectual Club has further inspired researchers, artists, comedians and thinkers to reflect on their work and performances in light of Lucy Porter’s play (see: the Stellar Quines' blog post from 17 Feb. 2015 and from 18 Feb. 2015) as the place of plays by women themselves continues to be debated in 2015, 303 years after the Fair Intellectual Club was founded. [A stage of their own: why female playwrights are still marginalised]

Blueprint for enhanced longitudinal studies

Longitudinal studies, mostly based on surveys relying on re-interviewing of individuals, have a long history in the UK. The Scottish Longitudinal Study (SLS), developed by a team of researchers, including Professor Allan Findlay of the Department of Geography and Sustainable Development, and medical researchers form Edinburgh and Glasgow, is a pioneering study, which combines census, civil registration, health and education data (administrative data)while maintaining anonymity within the data system. The collected records allow the comparing of individuals’ changing circumstances over time while retaining safeguards to protect personal information in a substantially more effective and cost-effective manner.
The system is used by the National Records of Scotland’s (NRS) statistical infrastructure for the production of new statistical series and by local, national government and NHS officials for policy analysis and has become a model in Scotland and other parts of the UK, which allows the linkage, holding, and analysis of personal data within appropriately strict legal and ethical constraints.

The research led to the launching in 2006 of the Longitudinal Studies Centre Scotland, which is funded by the Economic and Social Research Council.