Audience as Advisor: Developing IMMA’s dementia-inclusive programming by working with Focus Groups

This case study looks back at the Irish Museum of Modern Art’s experience of actively involving people with dementia as advisors in the development of its dementia-inclusive programming, during its recent two-year Art & Ageing Fellowship.

IMMA’s mission is to connect audiences and art, providing an extraordinary space in Ireland where contemporary life and contemporary art connect, challenge and inspire one another. Inherent within this mission is the need for IMMA’s exhibitions and collection to be accessible.

According to a report published in February 2020 by Alzheimer Europe, it is estimated that over 140,000 people will be living with dementia in Ireland by 2050. Social isolation, stigma and loneliness have long been referenced as challenges by both people living with dementia and their carers and family members. Taking into consideration this growing demographic and issues faced, IMMA was motivated to consider its role, by examining how can the museum could respond and take action.

In 2012 IMMA became one of the founding members of The Azure Network alongside three partners: Butler Gallery, The Alzheimer Society of Ireland and Age & Opportunity. IMMA has since been advocating for and providing dementia-inclusive arts programmes. In 2017, IMMA launched a two-year action-research Fellowship, completed by Bairbre-Ann Harkin. This Art & Ageing Fellowship presented an opportunity to reflect on programming thus far and identify and examine key questions arising out of this work.

Setting Out Goals and Shared Values

At the outset, the Fellow worked with colleagues in the Engagement & Learning Department, and members of the Visitor Engagement Team (gallery educators who facilitate tours and studio-based workshops) to develop a logic model which was to act as a flexible roadmap for programming and evaluation. This Logic Model explicitly stated the shared values and agreed goals, and was developed by the whole team working on dementia-inclusive programming within the museum.

IMMA Focus Group, Art-Making Session

The following goals were agreed

  • To provide accessible, stimulating, interactive contemporary arts experiences for people living with dementia, their families and carers in a fun and sociable environment, where all are encouraged to participate equally
  • To contribute nationally and internationally to knowledge-base of arts and dementia programming by museums and galleries.

Shared programming values were agreed, stating that programmes should

  • Champion the social model of disability
  • Respect all participants
  • Respect integrity of artwork and artists intention
  • Be facilitated by appropriately trained facilitators
  • Be fun, social experiences in a supportive environment
  • Be non-hierarchical
  • Be non-commercial
  • Encourage active participation by all

When considering the programme’s values, it became clear that it would be essential to begin to work with people living with dementia as advisors, so that programming could be developed in collaboration with people with dementia, rather than for people with dementia. IMMA began by asking for the advice of the Irish Dementia Working Group, an advocacy group of people who have been diagnosed with dementia, founded in 2013. Members of the IDWG were extremely generous in offering their advice, testing IMMA’s programme and also contributing to IMMA Visitor Engagement Team training.

Irish Dementia Working Group visits IMMA. Photo: Kilian Waters.

It is critical to acknowledge that there is no one universal experience of dementia. In order to recognise the breadth of experiences of those living with dementia, it was important to work in a sustained fashion with a wider group of people in order to really involve people living with dementia in a developmental capacity. During the two-year period of the Fellowship, IMMA worked with two Focus Groups. Each group participated in six experiences within the museum, over a three-month period. The first group comprised eight participants, including people living with dementia and family members. The second group came to IMMA from Parke House Nursing Home, including seven people living with dementia, two staff members and one family member.

Researcher and policy analyst Dr Ann Leahy collaborated on the project, taking on the role of observer, hearing from participants about what participation was like for them and providing an external perspective enabling IMMA to better reflect on the programme.

IMMA Focus Group, Slow Looking Session.

Activities of the Focus Groups

The activities of the groups included activities already within IMMA’s programme, such as dementia-inclusive tours using the Azure methodology, which was developed by the Museum of Modern Art, New York and used by IMMA since 2012. However, by identifying groups of people with whom IMMA developed a relationship with over-time, it also allowed the freedom to take more risks than in a regular Drop-In Azure public tour, for instance, exploring what supports might be necessary to facilitate engagement with installations where light levels could be deemed challenging.

Other activities trialled included TimeSlips, a facilitation-method developed by McArthur Fellow Anne Basting, that encourages participants to write a poem/short story together taking an art-work as its starting point; art-making workshops in response to selected exhibitions; multi-sensory experiences designed to encourage deeper engagement with selected exhibitions and slow, mindful looking tours using strategies inspired by the Harvard Graduate School of Education Project Zero.

The following methods were applied to take feedback from our Focus Group members, in order to learn what they felt was working well and what could be changed/developed.

  • Observation — Each session was observed by researcher Ann Leahy.
  • Conversations at the end of each workshop — Refreshments were served in the IMMA café following each session. This provided an informal atmosphere, where participants were encouraged to share their interests, thoughts about the experience and how they were feeling after each activity.
  • End of series interviews — Researcher Ann Leahy spoke with each participant individually at the end of each group’s series of activities. These interviews were then transcribed verbatim and used as a foundation for findings of the research.
  • Written feedback forms — Optional written feedback forms were offered to participants following the end of their experience. Often, family members completed these forms alongside those living with dementia, in order to support them to contribute. In the case of one participant whose dementia has impacted her reading/writing ability, the form was completed verbally with researcher Ann Leahy.

Outcomes

Feedback was then analysed thematically by external researcher Ann Leahy. Four themes emerged following this process:

I. Belonging, sociability and fun

Participants referenced the sociable, collective nature of the experiences at IMMA, noting that they felt ‘welcome’ and ‘at-home’. Many participants mentioned that the experiences felt ‘normal’, while being failure-free and fun. In participants own words

Ah, it was a wonderful experience, a wonderful experience… You’d be sad when you come to the end of it…

And leading up to the next tour they’d be asking or ‘what time do we need to be ready?’

Irish Dementia Working Group visits IMMA. Photo: Kilian Walsh.

II. Being challenged and being a contributor

Participants indicated that they valued the participatory nature of the experiences, being active contributors, rather than passive attendees. Feedback suggested that participants enjoyed the challenge and felt that they were both developing an appreciation for IMMA’s exhibitions and developing pride in this new interest. In participants own words

I enjoyed it very much, very much indeed. I felt very much part of what was going on. And I wanted to be part of it.

I enjoyed it immensely. It was enlightening – it’s a questioning and you have to examine it. It takes the cobwebs off the brain, it sharpens you up.

III. An equalising experience for all

Both participants with and without dementia said that they enjoyed the experiences, in their own right, as all were encouraged to participate equally. Many mentioned that contributing to discussions side-be-side was enriching and developmental for all. In participants own words

We have both enjoyed them so much and found them stimulating. Taking us out of ourselves……forgetting my role as a carer for a few hours. All really good.

Getting us out doing things, doing things we maybe should be doing anyway, but….it gives you a push.

IV. An ‘opening’ in lives otherwise becoming constrained.

Participants declared the IMMA activities as ‘broadening’ and ‘opening’ experiences that they found interesting, challenging and ‘special’. Many commented on the fact that this contrasted with aspects of their lives that were becoming ‘staid’ or constrained. In participants own words

You know your life can get very kind of staid and you know doing the same things all the time so anything that’s a bit different.

You are opening up the world to us.

These findings formed the basis of a series of recommendations for future staff training and programme development.

Art & Ageing Seminar

In October 2019, IMMA hosted a public Art & Ageing Seminar in October 2019. Guest speaker Emily Pringle, Head of Research Tate opened the Seminar, with a presentation exploring how values underpin museum research and programming decisions. Bairbre-Ann Harkin and Ann Leahy then shared their research, carried out during the two-year Art & Ageing Fellowship, delving into the learning that resulted. Two Focus Group members also shared their experience during this Forum, Jacinta Dixon (a participant living with dementia, also member of the Irish Dementia Working Group) and Tony McIntyre (a participant who cares for his wife Mary who is living with dementia). The event was also audio-recorded and live-tweeted, for those who could not attend in person. For more information, please see IMMA’s website or Soundcloud account below.

This seminar provided a timely opportunity to reflect on what was learned through this research and explore questions arising out of the Fellows’ research. It offered a welcome opportunity for experts across the arts, health and dementia-care sectors to connect and communicate, in an exploration of value-driven, rights-based approaches to accessible arts programming.

Bairbre-Ann Harkin
Irish Museum of Modern Art
Art & Ageing Curator
@IMMAIreland
#IMMAArtandAgeing #Azure