Participants
Carers, formers carers, and supporters of people living with dementia participated in the project and contributed to the creative process. They were mainly members of the Dementia Carers Campaign Network (DCCN) which is an advocacy group for people with experience caring for a loved one with dementia and is supported by The Alzheimer Society of Ireland. Other carers and carers supported by The Alzheimer Society also took part.
The DCCN was set up in 2013 and aims to be a voice of and for dementia carers in Ireland, and to raise awareness of issues affecting families living with dementia.
Marie Brett also consulted with experts in law, arts, advocacy, and human rights to inform this work.
Aims
- To publicly explore potentially challenging aspects of care in Ireland today through sharing of re-imaged ‘hidden stories’, including exploring the possible implications of the new capacity legislation for family carers, the Assisted Decision Making (Capacity) Act 2015.
- To build new audiences and offer topical thinking and reflection space.
- To encourage philosophical consideration of how human rights can be promoted and protected in Ireland and share an understanding that rights and greater capacity may have unintended consequences that need to be explored.
Methods
Marie Brett was an invited artist in residence at the Irish Museum of Modern Art (IMMA) in 2018, and during this time was researching the impact for family members caring for a person with a dementia, building on an earlier artwork, E.gress. Keen to learn more, during IMMA’s artist residency, Marie attended a Law Society human rights event, which discussed Ieland’s new capacity legislation, its complexity and its relation to family care giving. Marie was curious and pursued further research. In 2019, she contacted the DCCN to ask their members to collaborate with her in the process of making a new artwork, by sharing stories of their lived experience as a family carer or supporter of someone living with dementia.
The carers met with Marie a number of times, in different parts of the country, both individually and in groups, to share aspects of their lived experience. During this period, Marie led a series of conversational and writing workshops and numerous stories were gathered. Over a series of many months, she went on to combine the carers’ writings and aspects of shared verbal stories into a distilled, collective story.
Marie then worked with dance artist and choreographer Philip Connaughton and together they explored ways the stories could be interpreted though movement of the body and relation to place. They worked online from opposite ends of the country using video chat, due to Covid-19 public health regulations preventing travel. Marie shared her research, reading material notes, aspects of carers’ stories, recorded conversations and the beginnings of the newly written narrative, and Philip made a series of experimental creative responses to these materials through his body, which Marie gave feedback and direction on.
When a break in Covid-19 restrictions appeared, IMMA offered the use of their public outdoor space – The People’s Pavilion – as a site to develop the work-in-progress further. This enabled Philip and Marie to move out from the screen, and to meet and work in person. DCCN members and ASI staff also attended and contributed their thoughts, ideas and reflections into the evolving series of work.
These performative responses were presented as a work-in-progress at the People’s Pavilion in IMMA during the summer of 2020. Alongside, Philip and Marie met the carers and other stakeholders online and kept in contact by video chat, sharing activity, exchanging knowledge and opinions, and pursuing developmental updates.
Artistic Outputs
The project resulted in three distinct art pieces. A bespoke website (https://www.yesbutdoyoucare.ie/) includes supporting contextual materials, a photographic series, a catalogue with three contextual essays, a booklet with an essay, a series of online and in-person developmental and collaborative activities / events, and two conference presentations.
Due to Covid-19 public health guidelines in place in Ireland at the time, the later stages of the collaboration between Marie, Philip and the carers took place online. The guidelines also meant that the artwork itself had to shift, from an intended live performance with an audience, to a re-imagined staged event, and Marie researched possible sites which could enable social distancing. This became a new vision for the artwork.
To enable this new plan as a way for work to continue, Marie and The Alzheimer Society of Ireland secured additional funding, and a staged live event was produced with Philip Connaughton and actors Eugene D’Arcy, Cathy Belton, Collette Forde, Claire Loy, Shane O’Reilly, Michael Sands in a series of huge warehouse spaces. Visual art, sculptural forms and floor drawings were included, as well as recorded music, sound, and projected video elements.
Epic Productions professionally filmed the co-edited the live installation with Marie, which was streamed by the Irish Museum of Modern Art, and shared by The Alzheimer Society of Ireland, for two weeks in April 2021. A catalogue with three contextual essays by Dr Eilionóir Flynn, Sarah Kelleher and Tina Leonard, was printed to coincide, and can be read here: https://www.yesbutdoyoucare.ie/guide
Separate to the live installation, a 10-minute filmic artwork was also created which now forms part of IMMA’s National Collection. ‘Yes, But Do You Care?’ premiered at IMMA in July 2022, with a panel discussion and response by Dr Patricia Shaw, an eminent scholar in the field of social practice and founder of an international Research-in-Action Community . The film is subsequently being shown at Sirius Arts Centre from 27 August – 15 October 2022, as part of The Hidden Mountain, the Fort and the Five Trees, a survey exhibition of Marie’s work.
Dr Shaw’s essay Venturing on Dangerous Ground as a response to the filmic artwork was published in IMMA’s online magazine and printed as a limited-edition booklet of 500 copies.
‘A complex and poignantly beautiful film… An important work that speaks to and for many in society whose voice is unheard.’ – Helen O’Donoghue, Irish Museum of Modern Art
Evaluation Methodology
The project was evaluated in partnership with Dr Francesca Farina (Global Brain Health Institute, Trinity College Dublin), which involved Person Public Involvement (PPI) advisers who co-developed the evaluation plan. Dr Farina also created a blog post about the project, which you can read here: https://www.gbhi.org/news-publications/yes-do-you-care
Evaluation Outcomes
The outcomes for the Dementia Carers Campaign Network were very positive, including being involved in a unique, informed, thought-provoking piece of art, being listened to, gaining confidence in telling more difficult stories of care, and seeing those stories reimaged publicly in a new light. The work also included creating a space to further the discussion of the Assisted Decision Making (Capacity) Act from the perspective of the carer, and the needs of the carer within this.
Some of the responses from the carers involved in the project are included here:
‘An excellent rendition, capturing the ‘inside voice’ on the outside. I really found that each piece resonated something deep inside as a carer.’ – Máire-Anne Doyle, DCCN
‘I found the process incredibly cathartic, and it released a lot of inner feelings, and I was sceptical at first. I think it’s a fantastic piece of work, it’s really poignant.’ – Raymond Cregan, DCCN
‘Every one of us got some sort of catharsis and some sort of understanding from it; and it’s a very difficult journey.’ – Nuala O’Connell, DCCN
The outcomes for The Alzheimer Society of Ireland included drawing a new audience, through art, to their advocacy work, giving the opportunity to carers who don’t speak publicly to have their stories told through the protection of an interpreted artistic performance, increasing understanding of the needs of dementia carers, networking with other leading professionals in the field, and raising awareness of the Dementia Carers Campaign Network and its objectives.
‘It gave a safe-space for carer’s real stories… stories never heard before; it’s so important we hear them.’ – Laura Reid, Alzheimer Society of Ireland
The outcomes for the artists were very positive, including the making of new artwork, reaching new audiences, the considerable development of each of their practices, extending their knowledge and trying out new ways of working, and being involved within a supportive team that supported risk taking and creative vision.
For the artists, outcomes also included the collaboration with the carers, engaging bravely with sensitive materials and being trusted to carefully create with same, and also developing new approaches to interpreting stories (poem writing) and new ways and means of performance to share publicly.
The public health guidelines in place in 2020 and 2021 also meant that the outcomes for the artists included learning how to continue to work online and persevering and adapting amid Covid-19 restrictions, problems, and adversity.
Documentation and Dissemination
To view the live installation artwork visit the project website www.yesbutdoyoucare.ie. The website includes a series of supporting digital and downloadable contextual materials.
The filmic artwork ‘Yes, But Do You Care?’ joined IMMA’s National Collection in 2021. Read more on the IMMA website.
A behind-the-scenes documentary, edited by Lucia Pola, shares the responses of family carers, the artists and contextual advisors (in law, human rights and advocacy) to the creative process and the developing art pieces.
Partners
The Alzheimer Society of Ireland
Dementia Carers Campaign Network
Irish Museum of Modern Art
Supported by:
Jane O’Hanlon of Poetry Ireland
Mark Felton of Felton McKnight Solicitors
Andrea Ainsworth, voice coach
Dr Eilionóir Flynn, legal, human rights and capacity advisor
Martin Drury, Sharon Murphy and Clodagh Piper, theatre production assistance and advice
This case study has been adapted from a case study originally authored by Judy Williams, Advocacy Engagement and Participation Officer at The Alzheimer Society of Ireland, and commissioned by Create, the national development agency for collaborative arts, as part of their Artist in the Community Scheme case studies. The case study is included here with kind permission from Create.
