A novel programme: Agentive here-and-now interaction in persons with dementia

Lead Research Organisation: University of Sussex
Department Name: Sch of Media, Arts and Humanities

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

Publications

10 25 50
 
Title Storytelling cards 
Description The artefact presently comprises 120 Tarot-size cards, 60 of which are colour images adapted from sites such as Age Positive Image Library https://ageing-better.org.uk/news/age-positive-image-library-launched and Unsplash https://unsplash.com/ and 60 text prompts with coloured reverse to indicate beginning, sensory, plot, or ending of a narrative built by players from the images they are dealt. The 60 text prompts comprise four types: Character, Sensory (some of which contain QR codes that link to audio fragments), Plor, and Ending. In the development stage, some sensory cards included scent. Audio and scents were chosen to match one of the five themes (12 cards each) making up the picture cards. 
Type Of Art Artefact (including digital) 
Year Produced 2023 
Impact The product has been used in day centres, care homes, and private houses and has led to lively engagement from players. Inter-group communication is a key aim of the activity, and players have included healthy older and younger people, and those with dementia. Groups have sometimes been intergenerational. 
URL https://storytellingconnects.co.uk/
 
Description Emerging impact from Storytelling Connects, the activity which the funding helped us to develop, relates to a wider than expected population of general users and a narrower specialist user group than originally targetted. The activity was intended to create opportunities for people diagnosed with dementia to maintain and enhance social relations. We found that (1) the activity worked best for people in the earlier stages of the disease; and (2) success with this group depended on a facilitator who knew the participants and was able to offer direction and reassurance. The activity has also proved popular with groups of healthy older people, and we have had interest from Befriending Networks https://www.befriending.co.uk/ and the National Academy for Social Prescribing https://socialprescribingacademy.org.uk/ We are offering three events as part of Social Prescribing Day, 14 March 2024 https://socialprescribingacademy.org.uk/whats-happening-for-social-prescribing-day-2024/ comprising a 30-minute webinar and in-person workshops at the Universities of Sussex and Northampton. We have been selling packs of the newly designed cards to individuals and organisations since their production in November 2023 in time for the two-day Healthy Ageing Conference in London https://www.healthyageinguk.org/2023/. Jessica Kingsley publishers https://uk.jkp.com/ are interested in adopting the activity. Users report favourably on the quality of the product and adopt it for its low cost, simplicity, portability, and adaptability. The activity achieves its aim of stimulating participants, encouraging social cohesion, and facilitating individual agency.
First Year Of Impact 2023
Sector Healthcare
Impact Types Societal

 
Title Storytelling Connects 
Description Trade Mark No: UK00003921784 (Figurative) Class(es): 28 Application published 30/06/2023 In Trade Marks Journal, No 2023/026. End of opposition period 30/08/2023 Registration Certificate expected mid-September 
IP Reference  
Protection Trade Mark
Year Protection Granted 2023
Licensed No
Impact Additional protection may be sought for the design of the materials and their ncluson of sensory aspects.
 
Description Academy for Dementia Research and Education (ADRE) Leicestershire 15 February 2023 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact Dr Alison Ward made a further visit to the Academy for Dementia Research and Education (ADRE) Leicestershire 15 February 2023 to deliver a later version of the activity now using laminated A5 images and some basic text prompts as story scaffolding.
Year(s) Of Engagement Activity 2023
URL http://academyfordementia.org/site/
 
Description Academy for Dementia Research and Education (ADRE) Leicestershire 16 November 2022 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact Dr Alison Ward delivered an early version of the activity using laminated A4 images to a group at the Academy for Dementia Research and Education (ADRE) Leicestershire 16 November 2022
Year(s) Of Engagement Activity 2022
URL http://academyfordementia.org/site/
 
Description Autumn Lodge Dementia Care Home, Hove BN3 5PD 10 February 2023 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact A second workshop at this care home to assess a later version of the activity with education size card images https://spingold.co.uk/education-cards/
Year(s) Of Engagement Activity 2023
 
Description Autumn Lodge Dementia Care Home, Hove BN3 5PD 16 December 2022 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact Workshop to trial early version of the Storytelling activity using A4 laminated images. The activity proved challenging for the mid-stage dementia participants.
Year(s) Of Engagement Activity 2022
 
Description Brook House Care Home, Lutterworth LE17 6LA 14 February 2023 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact Dr Alison Ward made a further visit to Brook House Care Home, Lutterworth LE17 6LA 14 February 2023 to deliver a storytelling workshop with early version materials.
Year(s) Of Engagement Activity 2023
 
Description Brook House Care Home, Lutterworth LE17 6LA 28 April 2023 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact Dr Alison Ward offered a workshop trialling the activity with care home residents at Brook house, Lutterworth LE17 6LA 28 April 2023
Year(s) Of Engagement Activity 2023
 
Description Conference Presentation and workshop at 'Dementia Pathways on Your Doorstep', Academy for Dementia Research and Education (ADRE) and University of Northampton NDRIC 23 August 2023 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Dr Alison Ward and Dr Simon Williams led two workshops during the day 23 August 2023 comprising a talk on the project by Dr Ward followed by an opportunity to try out the activity
Year(s) Of Engagement Activity 2023
URL https://www.northampton.ac.uk/news/powerhouses-in-dementia-research-joined-forces-for-first-collabor...
 
Description DEFIN'YD project members online workshop 16 March 2023 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Apart from an early pilot, this event was the first online trial of the activity. Participants, who had early onset dementia, had been forwarded images by post in advance of the workshop: their own single image and thumbnail copies of the other images for reference. Many of the participants had already prepared a story using all the images. Their personal versions were interesting but pre-empted the group construction of a narrative. It seemed after all that the activity was not suitable for online delivery with participants having these characteristics.
Year(s) Of Engagement Activity 2023
 
Description Dhaba Cafe University of Sussex 24 April 2023 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Supporters
Results and Impact A mixed group of students and supporters trialled a version of the activity with newly printed tarot size cards. The relaxed environment was conducive to creativity and collaborative group work.
Year(s) Of Engagement Activity 2023
 
Description Healthy Ageing Conference 2022 in-person poster presentation 14-15 November 2022 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Other audiences
Results and Impact Poster presentation over two days at the Healthy Ageing Conference London 14-15 November 2022
Year(s) Of Engagement Activity 2022
URL https://www.healthyageinguk.co.uk/2022/#:~:text=Returning%20on%2015%20Nov%20as,with%20registration%2...
 
Description Healthy Ageing Conference 2023 14 November 2023 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Other audiences
Results and Impact Dr Alison Ward led two workshops in which participants could try out the activity, now called Storytelling Connects. Dr Williams participated 14 November 2023.
Year(s) Of Engagement Activity 2023
URL https://www.healthyageinguk.org/2023/
 
Description Healthy Ageing Conference 2023 in-person poster presentation 13-14 November 2023 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Other audiences
Results and Impact Poster presentation over two days at the Healthy Ageing Conference London 13-14 November 2023
Year(s) Of Engagement Activity 2023
URL https://www.healthyageinguk.org/2023/
 
Description Henfield Haven Day Centre BN5 9DT 2 February 2023 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact Trial of education size cards https://spingold.co.uk/education-cards/ with mixed group of healthy participants and participants with early stage dementia
Year(s) Of Engagement Activity 2023
 
Description Local residents trial Shoreham-by-Sea 4 April 2023 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact Two generations of contacts living locally trialled the activity with laminated A6 images. This version had no text prompts. Participants complained that the size of the cards made them difficult to hold comfortably, and the laminated sides cut into their skin.
Year(s) Of Engagement Activity 2023
 
Description National Innovation Centre for Ageing Voice workshop at the University of Sussex 24 May 2023 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Other audiences
Results and Impact The National Innovation Centre for Ageing organised this workshop to assess the playability of smaller tarot size cards via their Voice scheme. Publicity was online and national though unsurprisingly attendees came form the local area.
Year(s) Of Engagement Activity 2023
 
Description New card design student trial at the University of Sussex 11 December 2023 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Postgraduate students
Results and Impact Workshop to trial new card design and assess four categories of text prompts
Year(s) Of Engagement Activity 2023
 
Description Online pilot 1 Zoom 17 November 2022 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Other audiences
Results and Impact Online pilot 1 convenience sample testing storyboard comprising set of beach theme images from Pikwizard via Zoom 17 November 2022
Year(s) Of Engagement Activity 2022
 
Description Online pilot 2 Zoom 22 November 2022 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Other audiences
Results and Impact Online pilot 2 convenience sample testing storyboard comprising set of beach theme images from Pikwizard via Zoom 22 November 2022
Year(s) Of Engagement Activity 2022
 
Description Presentation and workshops DEFIN'YD project closing conference 25 July 2023 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Dr Alison Ward presented the project and Dr Ward and Dr Williams then led two workshops for younger people with dementia (members of DEFIN'YD) in which they tried out the Storytelling Connects activity, which was developed with support from the study funding. The in-person activities suggested that for these participants the face-to-face version of the materials was more suitable than the online version that some of the same participants took part in on 16 March 2023.
Year(s) Of Engagement Activity 2023
 
Description Presentation in Department of Languages University of Sussex 28 February 2024 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Other audiences
Results and Impact Presentation of Storytelling Connects project followed by activity for departmental colleagues in the Department of Languages University of Sussex with a view to use of the activity in teaching and invitation to collaborate on a journal paper, 28 February 2024
Year(s) Of Engagement Activity 2024
 
Description Showcase UKRI/Zinc Catalyst Euston House, 24 Eversholt Street London, NW1 1AD 7 June 2023 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Third sector organisations
Results and Impact Presentation of project
Year(s) Of Engagement Activity 2023
 
Description Social Prescribing Day in-person workshop University of Northampton 14 March 2024 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact In-person Storytelling Connects workshop at the University of Northampton as part of Social Prescribing Day 14 March 2024.
Year(s) Of Engagement Activity 2024
URL https://socialprescribingacademy.org.uk/whats-happening-for-social-prescribing-day-2024/
 
Description Social Prescribing Day in-person workshop University of Sussex 14 March 2024 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact In-person Storytelling Connects workshop at the University of Sussex as part of Social Prescribing Day 14 March 2024.
Year(s) Of Engagement Activity 2024
URL https://socialprescribingacademy.org.uk/whats-happening-for-social-prescribing-day-2024/
 
Description Social Prescribing Day online presentation 14 March 2024 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Third sector organisations
Results and Impact Video and PowerPoint talk and demonstration of Storytelling Connects followed by Q&A as part of Social Prescribing Day 14 March 2024.
Year(s) Of Engagement Activity 2024
URL https://socialprescribingacademy.org.uk/whats-happening-for-social-prescribing-day-2024/
 
Description St Crispin Retirement Village, Northampton NN5 4RB 14 December 2022 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact Dr Alison Ward trialled an early version of the activity using A4 laminated images with elderly residents of a retirement village. Like other participant groups, this one continued to need active direction from the facilitator.
Year(s) Of Engagement Activity 2022
 
Description Victoria Chatsworth Nursing Home Hove BN3 6DA 23 February 2023 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact Trial of education size activity cards https://spingold.co.uk/education-cards/ with healthy participants
Year(s) Of Engagement Activity 2023
 
Description Workshop Brook House Care Home 28 April 2023 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact Activity delivered by Dr Alison Ward and carers 28 April 2023.
Brook House Care Home
15 Bell Lane
Husbands Bosworth
Lutterworth
Leicestershire
LE17 6LA
https://www.cqc.org.uk/location/1-456039131/contact
Year(s) Of Engagement Activity 2023