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Blog on Dr Tony Young's book on living with dementia

PhD student Louise Rolland has written a blog on our latest 50th Anniversary Talk.

By Louise Rolland (NewRoutePhD student)

Dr Tony Young obtained his MA and PhD in Applied Linguistics from the Department of Applied Linguistics and Communication at Birkbeck, University of London. He is currently Head of the Applied Linguistics section of the School of Education, Communication and Language Sciences at Newcastle University. On Friday, 27 February 2015, he returned to his alma mater to present his latest research on the topic of communication, care and living with dementia.

Dr Young set the scene with some facts and figures illustrating that dementia is a world-wide epidemic. In the UK 800,000 people are estimated to be living with the syndrome. The brain damage associated with dementia causes symptoms such as memory loss and problems with language. These can be very distressing for People Living With Dementia (PLWD), leading to additional mental health problems. Supporting PLWD represents a major challenge for society, from the health, social and economic perspectives.

Dr Young highlighted the fact that policies tend to focus on a biomedical approach to dementia, while there are indications that communication can make a real difference to quality of life. Reports from public, charitable and professional bodies have found that poor communicative practice is prevalent in social care and health sectors with regard to PLWD. Given the decline in communicative functions which accompanies dementia, Dr Young argued, people are not getting the support they need and can become very isolated. Indeed a review of existing guidance revealed that little is available and in particular it has not been developed in consultation with PLWD and their carers.

With the support of the Alzheimer’s Society, Dr Young and colleagues set out to investigate best practice according to the experiences of PLWD and carers, with the aim of building a model of effective communication. A range of methods including observation of practice, focus groups and individual interviews were used to gather data over two years (2009-2011). While other stakeholders such as healthcare professionals and care home managers were involved, the researchers were clear that they wanted PLWD to have the final say.

The person-centred dementia model for effective communication which was developed from the data collected draws on the concepts of Communication Accommodation Theory. It has three levels: ‘beliefs and principles’, ‘eight components of communicative practice’ and ‘actual communication’. These are fleshed out in the Dementia Toolkit for Effective Communication (DEMTEC), which is intended to be flexible and adapted to individuals’ needs. For example, advice on the principle of ‘mindfulness and empathy’ states that this is “a commitment to finding meaning in confused speech or behaviour”, which means embracing different communication modes and being receptive to clues that may be specific to the individual concerned. At the next level, scenarios and case studies are provided as examples of actual communicative practice.

DEMTEC is being disseminated freely through the DemTalk website, which has pages tailored to different audiences (family carers, social carers and health or care professionals), in addition to academic and other routes. Dr Young hopes to obtain funding to put the toolkit into practice and evaluate its impact. The Methodist Housing Association for example is keen for training to be made available for its staff. Further projects to adapt the model for different users include plans for a DemTalk phone app and to translate the model into different languages and cultures (e.g. China and Singapore), and for medical education.

Appreciative feedback and questions from the audience indicated that the talk had struck a chord, with several people sharing personal experiences of supporting PLWD. Communication emerged as vital to supporting personhood and relationships with others. As such the DEMTEC model offers a toolkit which respects the individual and leaves room for personal judgement, because human interaction cannot be prescribed.

Further reading:

Giles, H., and Ogay, T. 2006. Communication accommodation theory. In Whaley, B.B. and Samter, W. (eds), Explaining Communication. Contemporary Theories and Exemplars. Lawrence Erlbaum, Mahwah, New Jersey, 293-311.

Young, T.J., Manthorp, C.,  Howells, D.,  & Tullo, E.S. (2011).  Developing a carer communication intervention to support personhood and quality of life in dementia.  Ageing and Society, 31 (6), 1003 – 1025.

Young, T.J., Manthorp, C., Howells, D., & Tullo, E.  (2011). Optimising communication between medical professionals and people living with dementia.  International Psychogeriatrics 23 (7), 1078 – 1085.

Young T.J., Tullo E.S., & Lee R. (In Press, 2015). Person-centeredness, culture and communication in dementia care.  Chapter in (forthcoming) Topics in Speech Processes: Language Production and Perception, Ed. A. Aguale, London: Continuum.

See the online recording of the lecture here.

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