Guest blog: Supporting communication in dementia research

A growing area of application of Conversation Analysis is in helping people deal with the difficulties of dementia. In this very welcome guest blog, Joe Webb and Jemima Dooley tell us how adapting qualitative approaches could help people communicate their stories, and describe an exciting new collaboration with people who actually live with the condition.

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Joe Webb, Bristol

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Jemima Dooley, Bristol

A growing body of conversation analysis (CA) research focuses on dementia and communication (see Dooley et al., 2015, and Kindell et al., 2017 for overviews). However, people living with dementia are also keen to tell their own stories and be active researchers (McKeown et al., 2010).

High profile activists living with dementia, such as Kate Swaffer, Wendy Mitchell and Chris Roberts, as well as important initiatives such as the Dementia Diaries, , illustrate how people with dementia can be at the forefront of research and clinical developments.

Traditional methods serve people with dementia poorly

Traditional qualitative approaches that aim to help people tell their own stories, such as interviewing or focus groups, are ill-fitted to some people living with dementia. For example, they may have difficulty in answering direct questions and compound questions (Jones et al., 2016) or questions focusing on memory (Williams et al., 2018). In conversations we’ve had with people living with dementia, they describe feeling ‘on the spot’ in an interview, or a conversation, where they are persistently in ‘second position’, having to answer questions.

There does exist guidance on adapting research methods for dementia, giving helpful advice such as avoiding factual or specific questions that rely heavily on immediate memory (Lloyd et al., 2006; Nygard, 2006). However, as researchers of communication we are all too aware of how interactional context can make following communication guidelines difficult. Where a question appears within the flow of conversation is as important as how it is constructed. For example, in a recent project called ‘Getting Things Changed’, we analysed communication in dementia care settings and found that, while ‘can you remember’ type questions often lead to interactional difficulty in dementia care settings (especially if the questioner reveals they knew the answer, retroactively framing the question as a kind of test), recall/memory eliciting questions can be less problematic when the person with dementia has instigated the topic of discussion themselves (see Williams et al., 2018) These contextual factors have to be considered when talking about communication guidelines, and actually including people with dementia in research can help identify which factors are the most important.

Working with people living with dementia to develop qualitative methods

We have been working with a fantastic group of researchers living with dementia, Harry James, Sandie Read and Roy James (or the Forget-Me-Nots as they have collectively dubbed themselves). Our aim is to come up with ways to support people living with dementia to tell their stories in a research context.

The Forget-Me-Nots identified three ways to achieve this:

(1) Provide an informal environment for discussion: This allows people to self-select for talk, rather than feel interrogated by questions.
(2) Have people living with dementia as facilitators: In Getting Things Changed, conversations flowed more readily when interactional partners shared their own experiences, allowing the person living with dementia to come in to the conversation on more ‘equal’ terms. For this reason, the Forget Me Nots suggested that they could run a focus group.
(3) Have an ‘anchor’ for conversation: It is easier for participants with short-term memory difficulties to tell us something about their lives if they had a way of anchoring their thoughts. In Getting Things Changed, we asked people living with dementia (including the Forget-Me-Nots) to comment on video recordings of routine interactions. This worked well in encouraging reflection on the interactions moment-by-moment and in relieving the pressure of having to remember information and answer direct questions.

With these three points in mind, we are going to use PhotoVoice with people with dementia. PhotoVoice is a qualitative method where participants photograph scenes in their day-to-day life and use the images as jumping off points for discussion. The Forget-Me-Nots are passionate about improving post-diagnosis care for people with dementia, so we will be asking people to take photographs that represent their life post-diagnosis and bring them to a group discussion.

Photo Voice

PhotoVoice has been used previously with people with dementia (Wiersma, 2011), but to our knowledge this is the first time co-researchers living with dementia have adapted the approach, co-produced the project and actively shaped the research agenda.We are particularly interested in how the photographs affect the interaction as it unfolds, which we will explore using conversation analysis. We have also made exciting links with the Royal Photographic Society and hope to be able to exhibit the photographs, along with participants’ words,in a public space.

Watch this space as this project unfolds!

We would like to thank the Forget Me Nots for their never-ending patience with us, and Helen Manchester, Junko Yamashita and Val Williams for their support and advice. A huge thank you as well as to the Brigstow Institute and the Elizabeth Blackwell Institute for funding such an exploratory project.

Dooley, J., Bailey, C., & McCabe, R. (2015). Communication in healthcare interactions in dementia: a systematic review of observational studies. International Psychogeriatrics, 27(8), 1277-1300.
Jones, D., Drew, P., Elsey, C., Blackburn, D., Wakefield, S., Harkness, K., & Reuber, M. (2016). Conversational assessment in memory clinic encounters: interactional profiling for differentiating dementia from functional memory disorders. Aging & Mental Health, 20(5), 500-509.
Kindell, J., Keady, J., Sage, K., & Wilkinson, R. (2017). Everyday conversation in dementia: a review of the literature to inform research and practice. International journal of language & communication disorders, 52(4), 392-406.
Lloyd, V., Gatherer, A., & Kalsy, S. (2006). Conducting qualitative interview research with people with expressive language difficulties. Qualitative health research, 16(10), 1386-1404.
McKeown, J., Clarke, A., Ingleton, C., & Repper, J. (2010). Actively involving people with dementia in qualitative research. Journal of clinical nursing, 19(13‐14), 1935-1943.
Nygård, L. (2006). How can we get access to the experiences of people with dementia? Suggestions and reflections. Scandinavian Journal of Occupational Therapy, 13(2), 101-112.
Wiersma, E. C. (2011). Using photovoice with people with early-stage Alzheimer’s disease: A discussion of methodology. Dementia, 10(2), 203-216.
Williams, V., Webb, J., Dowling, S., & Gall, M. (2018). Direct and indirect ways of managing epistemic asymmetries when eliciting memories. Discourse Studies, 1461445618802657.