Dementia Talk
Joe Webb, Val Williams, Marina Gall, Sandra Dowling
Dementia is often understood as a tragic illness, but increasingly policy and practice in the UK is driven by the goal of ‘Living Well with Dementia’ (Department of Health, 2015). Research has started to include perspectives of people with dementia themselves, and there is a growing literature using Conversation Analysis to explore interactions with people with dementia. This type of research is not generally ‘deficit’ based, but instead it aims to explore the interaction practices by which other people include or exclude people with dementia in ordinary conversation.
Our initial goal was to find out whether the Conversation Analysis (CA) of video recordings of natural interactions could be useful in creating change in the practices of support staff and carers. Our research questions were:
a) How can everyday decision making be facilitated in people with dementia?
b) Can workers learn how to improve their practices through video interaction analysis?
We found out early on that one-one personalised support and care were not readily available to people in the earlier stages of dementia, and that it was far more common for people to attend groups. The main body of video data was therefore collected at memory cafes, or at activity groups or day centres, where we sought to film interactions between people with dementia and any other ‘conversation partner’ as they happened. In all this consisted of 9 hours and 57 minutes of video data which included 28 participants with dementia and their conversation partners, supplemented by 8 initial interviews and 6 interviews where we took data back to the participants and recorded their responses and discussion.
The collection of video data was largely carried out by Joe Webb, who spent many days familiarising himself with the contexts, and becoming a known participant in the groups. Our study followed a strict protocol approved by the Social Care Research Ethics Committee, to ensure that people assessed as lacking capacity to consent on their own behalf had personal consultees who could give consent on their behalf. Permission to record events or conversations was always sought at the time, and so consent was continually re-negotiated with all participants. We were fortunate in this project to work with a group of people with early-onset dementia, at the Forget-Me-Not organisation run by Avon and Wiltshire Care Partnership (AWP). They advised our research, and three members, Roy James, Harry Davis and Sandy Read, formed a co-research group. They worked with the project throughout, and have contributed to all parts of this report.
We used a ‘Conversation Analysis’ approach to examine the data, viewing and reviewing the videos in order to understand better how the ‘routine’ methods of conversation are adapted or shaped in this context. We also took our key extracts back to the Forget-me-Not group, who brought their own experience and insight to bear in their responses to the data. They discussed the findings, and also re-imagined how they would like communication to happen. Their insights form the basis of training materials which we have produced, and which have been developed and piloted with training providers and dementia services.
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