Impact case study database

Working with dementia groups to achieve a life more ordinary.

Trade-union style banners hold a significant cultural position in many working-class communities. They represent strength in unity for communities and social groups tackling common challenges. Social solidarity through art is highly valuable for invisible disabilities like dementia.

The project aimed to give people diagnosed with dementia and their families tools and strategies to help them cope with living with the condition in a pragmatic and positive way. By collaborating with the respective dementia support groups, the A Life More Ordinary project gave a voice to their hopes, worries and frustrations. The project has now developed banners with 16 dementia groups to help them promote campaigns and highlight their experiences. The groups from across the country represent a variety of different backgrounds and objectives including the ‘Cottingley Crew’, a group for under-65s in Leeds, ‘The New Seasiders’ a recently established group in Kent, and ‘Hamari Yaadain’, a dementia café focussed on BME dementia sufferers in Leeds.

These interventions are important in improving the quality of life for people who are suffering from, or living with someone with, a life limiting condition. Kathleen Storton, Services Manager for the Alzheimer’s Society, Central & West Lancashire, commented that “…when you have a diagnosis you can sometimes feel that you are a bit useless and you’re not needed anymore and how am I going to contribute to society? Doing something like this [the banners] has helped people feel valued.” [G] The participation in the projects gave the group members an opportunity to feel in control of an aspect of their life at a time when their diagnosis may have left them experiencing a lack of control. The physical outputs they co-created, the exhibitions, chapbooks and banners, provided a tangible reminder of the activity with a condition that may have otherwise robbed them of this memory [J1-3].

Terry, a founding member of the Ragamuffins group in Oldham, found the sessions with Beesley, McMillan and Husband provided significant therapeutic benefit. “There is also the collective benefit to the group as a whole of memories being rejuvenated on times and issues perhaps long forgotten! Such recollections are both therapeutic and stimulating and it is interesting to see the frequent change in demeanour that often manifests itself among so many of those attending within a short period of time.” [C]

Campaigning with dementia groups for “the right to a grand day out”

The Yorkshire DEEP consisted of three groups who were all campaigning on different aspects of the challenges of using public transport. ‘Minds and Voices’ (York) had focussed on improving journeys by train, ‘DEEP Vibes’ (Scarborough) had been campaigning for North Yorkshire Council to make blue badges available to people with dementia and ‘Face it Together’ (Bradford) had focussed on improving journeys by bus.

The banner produced by the Yorkshire DEEP helped to kick start a campaign to make York Railway Station more dementia friendly. The groups had been campaigning for some time but had not captured public attention, leading to the groups becoming demoralised [B]. One participant wrote on their personal blog “…we’ve worked hard to get change but disheartened at the fact no one is listening to us.” [H2] Beesley’s work with the Yorkshire DEEP [2] had highlighted both the positive and negative sides of travel for people with dementia, identifying problems with timetables, platform layouts and station announcements. The banners were unveiled by group members, with the help of a local brass band, in front of members of the press and rush-hour commuters in York Station in May 2018 [A, B]. The ceremony attracted interest and support from the watching public, press and local businesses, helping to raise the profile of the issue.

The event helped to raise awareness and understanding of the issues with the station management. Following the event Northern Rail have engaged with Minds and Voices to provide advice on redesigning timetables to make them more dementia friendly. The involvement of people with dementia is a key tenet of the A Life More Ordinary project. One participant summarised the importance of the project and these activist interventions: “Travel is so important to me, yet is so stressful. Yet small changes can make it possible. I’m so glad I changed my plan today because all our words of the past 18 months, today became an ACTION of our own” [H4]

Prior to Beesley’s involvement the three groups that made up the Yorkshire DEEP network were campaigning individually on different aspects of transport challenges. The project brought together these groups in 2017 [H1] and provided a forum to coordinate their approach and generate a louder voice for change. The groups worked in collaboration with Innovations in Dementia, an organisation that supports and campaigns for the rights of dementia patients, to contribute to two major policy submissions. Firstly, their alternative report to the UN Convention on the Rights of Persons with Disabilities and second was their response to the Government consultation on extending the Blue Badge scheme to people with ‘hidden’ disabilities such as dementia [D, E]. As a result of Beesley’s development of the campaign the groups issues were recognised as the “County Council [North Yorkshire] agreed that people with dementia or their carers could now apply for a Blue Badge over the phone – and answer ‘cognitive questions’ such as ‘How will a Blue Badge help you?’, ‘Do you want to give up and go home if things go wrong when you are out?’” [D]. Nationally, change was also brought about as the government approved the calls for blue badges to be made available for people with ‘hidden’ disabilities. [F]

Engaging dementia communities around the UK to achieve “art for all.”

The success of the York banners prompted other similar groups to explore their challenges and hopes through the use of banners [G]. Beesley and his colleagues worked closely to co-produce a series of banners, each distinctly personal to the groups. Each banner took inspiration from an existing trade-union banner and conveyed a message through the images and symbolism.

Polly Kaiser, Consultant Clinical Psychologist at Pennine Care Oldham, commented:

“They [The Ragamuffins dementia group] have gathered to re-collect their memories, to laugh and to create and in doing so relationships and connections have been built. Profound issues and themes have been addressed with a lightness of touch.” [C]

The banners were reflective of the group members interests, cultures and experiences. All the ideas included in the banners came from the group participants, which were then brought to life by Beesley and his colleagues through the production of the physical banner. In conversation, Liz Menacer, the group facilitator with Young Dementia Leeds, commented that Ian had included their clients and facilitated their needs to make a statement about their dementia experience while celebrating their individuality and personal history [J1]. As one group facilitator observed “After a dementia diagnosis people feel cast aside, they don’t feel valued as there is no treatment.” [J2] The project provided users with a feeling of recognition, allowing them the opportunity to feel “…in some degree of control…” along with friendship and fun [J2]. When asked about their involvement in the project one participant with dementia said: “Really enjoyed [the project], nice to be involved and to know people take notice of what you say.” [J3]

A common theme highlighted by facilitators from different groups was the contribution the project made towards the peer support networks between both the users and their family members. In some cases, these peer support networks have continued after loved ones have passed away, supporting family members in bereavement [J2].

Although the disruption brought about by COVID-19 limited the opportunity for the banners to be displayed, the book and website produced to go along with the exhibitions proved a useful alternative for the groups, acting as a tangible reminder of their participation in the project [J3, K]. The nature of the condition has meant that many participants no longer have clear memories of their participation in the various project elements. The simple act of producing tangible outputs, such as chapbooks, aided participants memory of involvement.

The Unfurlings exhibition at the Harris Museum, Preston, launched 6^th March 2020 and was designed to be a welcoming environment for people living with dementia. The space was designed in collaboration with the Museum and the local dementia group to provide a homely, welcoming environment with comfortable seating centrally in the room. This allowed anyone with mobility issues to enjoy the banners in comfort [J4]. Following the lockdown, The Harris digitally captured The Unfurlings exhibition and linked in recordings of Ian McMillan’s poetry to allow visitors to experience the exhibition safely from home [I].

Knudsen’s research addresses the UN's Sustainable Development Goals 4

Quality Education, Goal 8 Decent Work and Economic Growth and Goal 10 Reduced Inequalities. The impacts are focused in two areas: a) more confident and advanced locally inspired ideation practices; and b) enhanced career focused screenwriting and production skills. Around 45 participating filmmakers from across Malaysia, Ghana and Colombia, countries in receipt of Official Development Assistance, took part in workshops in each country during 2017. They were able to share and access the ideation processes and discussions of all participants across three continents through a closed Facebook Group. Follow on workshops in 2019 in Colombia comprised of a further 40 filmmakers who were able to participate in the evolved workshops led by local filmmaker mentors who had taken part in the first workshops. Two sets of workshops took place in Colombia. One set with young people in a deprived inner-city area of Ibagué, a city previously caught up in civil war, and the other with the Chimila tribe near Santa Marta in the north of Colombia. The Chimila tribehave been ignored by successive Colombian governments failing to protect the small tribe of 1,346 people in 290 family groups (2017 census) dispersed by protracted civil war and land reform. Collaborating with University of Central Lancashire archaeologist Dr David Robinson, StoryLab joined their Wind Wolves Preservation Archaeology Excavation near Bakersfield in California between 2017 and 2019, in an innovative transdisciplinary partnership. The Wind Wolves Preservation Archaeology Project was engaged with excavating sites related to the Tejon Native American Tribe, who have now been connected into a global StoryLab community. Some half a dozen Tejon tribe members are connected to Robinson’s indigenous cave art research project. This project facilitates research-led engagement to enable the restoration of cultural spaces, artefacts and practices to members of the Tejon Tribe. This enabled enhanced cultural preservation for the tribe and also provided increased cultural participation for the wider community. The collaboration with StoryLab empowered members of the Tejon Tribe to commemorate their involvement in the project, as well as learn new creative skills through the co-creation of new cultural artefacts. Example testimonials from participants attest to the impacts achieved, with more examples available the two impact documentaries [A, B].

More Confident and Advanced Locally Inspired Ideation Practices

StoryLab has changed creative ideation practices . "I totally changed the way I think [...] StoryLab taught me that I don't have to think hard to come up with good stories. I can just put anything that comes to mind on paper and I'll be good" says Gabi from Ghana [B - 05:40]. Likewise, Kobi also from Ghana explains: "I think the fact that I didn't have to beat myself up about the script or the story was quite good for me. Because sometimes it can be really depressing when you think you've got a writer's block; yea, it can be really depressing sometimes; pretty hard. But then, these days I just take it easy. When it happens, I just let it be." [B - 20:54].

StoryLab helped participants connect with personal sources and voices, opening new ways of thinking about ideas development. "After StoryLab I realised that there are a lot of things I can tell from my own life. The method which I hold onto is the question of: why you? why now? It's very important. Why am I telling this story now and why am I telling this story?" explains Jannah from Malaysia [B - 03:28]. "The story is right there", Frank from Colombia discovered , "you just need to tell it. The tools, actions and facts are in the person telling it." [A - 18:15] Mauricio from Colombia was emphatic about the impact of the workshop experience: "I think this is the best professional experience that I've had. Because it was the exercise of creating, writing, at the same time we were applying the ethnomediaology. And I feel I grew as a scriptwriter, and a whole world of possibilities opened when we built a relationship with a community like the Chimilas." [A - 37:30].

StoryLab enhanced confidence to articulate and promote personal ideas in the public domain. This was very evident in Luqman from Malaysia's assessment of the impact on him when he states: "I feel more, I guess, less judgemental of myself. It made it easier for me to think, OK, the stories that I have, the ideas that I have, they're not that dumb." [B - 20:27]. Similarly, Fernando from Colombia discovered a new confidence: "The most interesting aspect is that those are things that start from an introspective perspective to something more imaginative. That's the most interesting thing to me." [A - 19:15]

StoryLab changed the way participants see how cinematic storytelling can be used in the pursuit of public and political recognition. As Stefany from Colombia points out: "For the Chimila indigenous community it is very important to be recognised, because due to the internal Colombia conflict, we were banished and the culture is about to disappear. That's why for us these spaces like StoryLab let the world and the Western society to know that the Chimila indigenous reservation still exists and is not lost." [A - 21:46].

StoryLab has helped give people some tools to re-imagine their heritage and histories. "That aside from being a fun method," Maritza from Colombia points out, "it is necessary in the communities, because with it, you find yourself, you feel related to your community, your country, your culture. Both when you tell your own story as well as when you listen to everyone else's. And in this historical moment that we live in Colombia, I think it is an important process for our self-esteem, for our peace process. If we don't find ourselves, if we don't recognise ourselves, if the others do not recognise us, that peace will be very difficult to achieve." [A - 38:40].

StoryLab has played an important role in enhancing cultural identity, cultural preservation and inter-generational engagement. Sandra Hernandez, the community leader of the Tejon Native American tribe who participated in the California workshop, cited the importance that StoryLab played in helping her community re-imagine their heritage and histories. She stressed how thinking of ideation in the context of the moving image is already helping inter-generational communication within the small Tejon community. A particularly strong example of the re-engagement of the young in the Tejon tribe's lost cultural heritage is one of the short films they made invoking a traditional Native American dance [F]. As Sandra Hernandez reflects: "[...] seeing our tribal youth work together and knowing that this is going to expand for us and grow and be something more than just this one video is very exciting for me because it's something where we now have the tools to teach, not only to teach ourselves, but to expand our group and to teach others, because we're not the only ones that have a story to share [...] That will definitely be something we take away to give back to our tribal members so that our stories can continue to be told by us." [C - 01:40].

Enhanced Career Focused Screenwriting and Film Production Skills

StoryLab helped participants transform their screenwriting skills. "It was very wonderful," explains Devine from Ghana, "learning all of those things from StoryLab Network. And all those who have read the screenplay have seen the difference in the previous days of how I used to write and now. I kind of feel like, wow! It was very engaging, very imparting." [E - 01:13]. Kobbah, also from Ghana, talks of a similar transformation: "Of course I learned scriptwriting in school, but StoryLab brought a new dimension to it for me. For me scriptwriting was mostly business and very serious stuff, but then StoryLab brought a kind of play into it. It made it feel like a game. A serious game, yes, but a game, actually. But with StoryLab writing scripts became more flexible for me." [B - 04:44]

StoryLab helped participants advance their professional and educational careers. Survey results based on participant experience with the StoryLab project has demonstrated the ways in which engagement with these new forms of artistic expression has enhanced their quality of life. 44% said they had applied for a new filmmaking or writing scheme, 22% had subsequently started a new university or other training course and 22% had started a new job in which cinematic storytelling played an important part [D - Q21]. The impact of this is highlighted by Mauricio, an early StoryLab mentee who then went on to become a mentor to participants from the Chimila tribe. " I'm working now for a production company in Bogotá called Cinema Sur. They put out a call, where you had to propose a story from a very minimal idea that they proposed. And I wrote that in a very short time. And I think I applied the technique there from StoryLab. Now that we are talking about this, I am aware that I used some StoryLab steps to apply for that job” [B - 17:28]. Jannah from Malaysia notes that StoryLab has "connected her with people from the industry, because I wasn't in the industry, so this really benefitted me that I get to know them first hand." [B - 11:00].

The benefits of connections fostered through StoryLab participation has contributed to continuing personal development, with 89% of participants writing a new script, 33% developing new ideas originating from StoryLab workshops, 22% of participants selling a new script or idea and 11% going as far as to make a new film [D– Q20]. Measures of success were reported by participants, 44% cited the increased confidence they gained from participating in the StoryLab Workshops, 67% cited the fact that they now feel the quality of their ideas has improved, 33% said they now had new ways of working and 22% cited the fact that new creative partnerships had helped them develop [D - Q22]. These new creative partnerships demonstrate the ways in which professionals are able to adapt to changing cultural values, inspiring Prince D from Ghana to take action; "StoryLab made me to kind of start that up. It's called The African Film Network. It is actually the people from the class of StoryLab, the workshop, are the nucleus of this particular organisation." [B - 12:17].

StoryLab advanced the teaching methods of filmmaking mentors and teachers in helping participants to create meaningful work. Many of those who participated in the project will go on to teach or be mentors. Frank in Colombia talks about how StoryLab has impacted on him as a teacher and mentor: "At the university where I teach, I teach from the writing process to filming and post-production. I have applied it [StoryLab] with my students and it has worked a lot. Right now, it is a tool that I use. [...] And I am very happy, very proud as a teacher because they made six good stories." [B - 00:23:04].

StoryLab has transformed participants aspirations, ambitions and helped make what seemed impossible possible. This is particularly evidenced by the impact on the Chimila community in the remote Santa Marta region of Colombia: "It was a door that opened", says Stefany . "I was thinking about what to study. When StoryLab came to my life, it showed me that my dream is to follow in the audio-visual world." [A - 54:42]. Her fellow Chimila participant, Yuranis, reiterates this sentiment : "I want to keep learning. I want to continue the process because I want to perform plays. My vision is not just to stay there, but to keep going forward." [A - 55:00]. Mauricio sums up what he feels the real impact has been on the Chimila community, with whom he worked as a mentor: "The most interesting impact that the StoryLab project had for the Chimila community was the seed that was planted in the young people, because they have been aware that they must empower in a new leadership. So they realise that by having audio visual tools, they can keep their testimony recorded. And they can control the creation of audio-visual stories." [A - 54:15].

The most compelling evidence of the profound impact that StoryLab has had on participants in Malaysia, Ghana, Colombia and California is evidenced in the scripts and films that the participants themselves have made [G] and in the documentaries that have been made about the projects. These include ‘Proowa (Yucca)’ a Chimila Tribe film and ‘The Box of Silence’ a Ibagué Youth Film produced by participants in StoryLab Colombia 2019 workshops [A, F, G, H].