Award Title: A novel programme: Agentive here-and-now interaction in persons with dementia
Funder: Economic and Social Research Council

Abstract: The primary objective of the research is to develop a novel facilitator-led activity for groups of older people who may have been diagnosed with dementia. The activity offers space for participants to share personal experiences and leads them on to collaborate in the group creation of a narrative. The personal experience is built around an image given to each participant and the participant describing its meaning for them; the group story is based on sharing all the images and agreeing on a possible narrative order that makes sense of them. Personal associations that include sensory memories based on the original image, e.g. music, scents, and tastes, may be carried over into the final, negotiated story. The facilitator collates the details into a multimedia version that can be given to each participant in hard and soft copy forms to keep. Realisation of the primary objective has implications for current NICE (2018) guidance for the assessment, management and support of people living with dementia and their carers: Section 1.4 Interventions to promote cognition, independence and wellbeing, presently 'Consider group reminiscence therapy for people living with mild to moderate dementia' (1.4.3) and 'Consider cognitive rehabilitation or occupational therapy to support functional ability in people living with mild to moderate dementia' (1.4.4). The study findings may provide evidence for upgrading the status of (1.4.4) from consider to offer, as it presently is for group cognitive stimulation therapy for people living with mild to moderate dementia (1.4.2); or to name group story creation in the range of activities that are offered to promote wellbeing and tailored to the person's preferences (4.1.1). 

The secondary objectives are (1) to involve collaborative partnerships that include people living with dementia, the public, and day centre and care home staff to co-design, test, and evaluate storytelling approaches; (2) to develop a training course in running the activity, targeted at day centre and care home staff who would become workshop facilitators; (3) to build an interactive website to support the facilitators in running the activity face-to-face and online; and (4) to establish a social enterprise start-up that will re-invest profits to update and expand a collection of storyboards and maintain and enhance a web platform for facilitators.

Lay Abstract: Project summary
The principle aim of the research is to develop a group story-telling activity for people living with dementia. The justification for doing so may be found in the contrasting linguistic behaviour of people with dementia when they are reminiscing about episodes in their earlier life and when they are reacting to events in-the-moment. In-the-moment speech appears to be more fluent, supported by shorter turns and shared conversational roles at these points; and agentive, i.e. linguistic directives, first-person declaratives, and other deontic expressions of intent are evident. The person appears to be more animated.  Conversely, whilst group reminiscence therapy is suggested for consideration by NICE (2018), some evidence of negative effects in one-to-one reminiscence has been reported, as the speaker becomes aware of the possible contrast between happier past times and their  present situation. The proposed activity would achieve a balance between the two conditions, between the natural tendency of people to talk about themselves and the more stimulating interaction enabled in social contexts. Before and after each session, whether in-person or online, participants will complete a situational measurement of their emotional well-being via an adaptation of the CWS (Camic, 2020). The stimulus provided would be a hard-copy image, one per person, from a collection that makes up a storyboard, i.e. it is possible for the images to be placed in an order that invites a narrative. Several orders are possible. Each person would be invited to describe their image, any music it reminded them of, and any associated sensory details, such as tastes, touch, and scents. In the next part of the activity, the participants are invited to agree an order to all the images, perhaps by laying them out on a table top, and collectively building up a story that makes sense of them. This stage involves negotiation and in-the-moment discussion. Afterwards, participants would be given hard and soft copies of the group-authored story to keep.  We intend the activity to be available in-person and online to suit participants and conditions. The aim is to provide people living with dementia and, by extension, older people who may feel socially isolated, with opportunities for enjoyable and creative social interaction that builds an end-product. 

Although one similar commercially available activity called Timeslips exists, it offers single images only, unlike our storyboards.  It does not invite participants to name music and other sensory associations with the images, and the participants are not given the completed story at the end.
We propose four other initiatives running alongside the development of the activity to further our key objective: ongoing stakeholder involvement in the trialling and development of the activity; a bespoke training course for facilitators interested in using the activity; an interactive website to support the facilitators; and the creation of a Community Interest Company to ensure the activity, training course, and website are self-sustaining.

Along with a report of the well-being measurements referred to above, the more conventional research output will be a linguistic analysis of participants' speech in the two parts of the activity. It is hypothesised that speech in the second, group interaction part will be more fluent and agentive. In common with other arts-based activities, associated improvements in well-being are expected. 

References
Camic, P. (2020). Canterbury Wellbeing Scales. https://zenodo.org/record/4063768#.YoZjQqjMKUl
NICE. National Institute for Health and Care Excellence (Great Britain). (2018). Dementia: assessment, management and support for people living with dementia and their carers. 
https://www.nice.org.uk/guidance/ng97

Research Activity Codes: 7.1 INDIVIDUAL CARE NEEDS
Health Categories: NEUROLOGICAL