Background / Rationale
There are ethical issues that a researcher must engage with when working with vulnerable groups (such as those living with a dementia). Above all, informed consent must be sought from research participants. This involves a clear explanation of what the project is and the sorts of questions that will and won’t be asked by the researchers.
In our work developing arts based workshops for education about dementia (UEA DESCARTES project 2012-2013) we found that the use of a comic was an engaging and effective way of conveying information quickly to time-poor care home staff. We also found that the care home residents with a dementia responded immediately and instinctively to the comic.
For Mark Making we worked with graphic artist Keara Stewart to create a comic explaining the project. The comic outlines the sorts of questions we hope to ask and the questions that won’t be asked including anything that involves personal or private information.
During the Visual to Vocal project at Dulwich Picture Gallery, copies of the comic were placed on every table during the final session. Every copy was taken by somebody present (carer or person living with a dementia or staff / artist on Visual to Vocal). The non-threatening playful nature of the comic enabled people to approach us with direct questions about Mark Making. It is perhaps no coincidence that everyone present (those living with a dementia, their carers and the artists and staff of Visual to Vocal) completed questionnaires.
View the full comic here
‘What is the value of arts and culture for people living with a dementia?’
is central to Mark Making. We have begun to answer this question by exploring others’work, via the literature. Articles in academic journals, reports in grey literature and books have all been included. Although the earliest relevant article was published some 20 years ago, the majority date from 2003 onwards with a preponderance of articles appearing in the last 3 – 4 years.
This aptly reflects the increasing interest by health care practitioners, artists and academics in this area. In addition, the literature demonstrates that there has been a noticeable proliferation of participative arts projects for people living with a dementia.
The project team with colleagues from King’s College London devised a careful and replicable search strategy (detailed in the final report). In the first instance an Endnote library was created that comprises 140 references.. From these data sources we haveanalysed those which include:
- explicit reference to creative activities that involved older people living with a dementia,
- the role of museums and / or art galleries for people living with a dementia,
- participatory arts activities that aim to enhance wellbeing or quality-of-life.
- participatory arts activities that focused on aesthetic appreciation for people living with a dementia,
- activities that did not include therapies of any kind,
- systematic data / meta-analyses about the value of the arts for older people.
The literature review has recently been published in ‘International Journal of Ageing and Later Life’
Interviews are being carried out with artists, staff and people living with a dementia (where possible) within the projects that are being visited.
Questionnaires were developed to guide interviews using the combined expertise of the Mark Making team. In particular, Dr. Chris Fox (consultant old age psychiatrist) helped to advise on the appropriate design of questionnaires for people living with a dementia. However during all interviews the questionnaires were used responsively and flexibly. For instance: not all questions were rigidly answered due to the constraints of time or because interviewees wanted to talk about other aspects of the project.
The aim of the interviews with artists and staff is to capture aspects of good practice within their projects and also to find out how they feel projects could best be extended and improved. These interviews have been recorded where possible and transcribed for analysis.
So far 10 interviews have been conducted with artists, staff and students involved in the participative arts projects. Others will take place throughout the course of Mark Making. They will be analysed thematically and incorporated into the final report.
The significance of paying careful heed to the voices of people living with a dementia was a key concern for the project team. The aim of the short, easily answered and non-threatening questionnaire for people living with a dementia was to try and determine what it is that people living with a dementia enjoy about the arts projects and also whether they experience any practical or emotional difficulties with the arts projects.
However, the project team is experiencing some difficulties accessing the views of people living with a dementia. For the most part these difficulties are connected with logistical and pragmatic issues and not the reluctance of participants to share their views.
Neither of the researchers is able to spend enough time within the arts projects to develop the trust-based relationships that allow those living with a dementia to feel safe enough to answer questions in any depth and voice opinions. However, on several occasions where there has been time to talk in detail with participants, it is clear that people have strong opinions and preferences about the arts projects they are involved with.
Although there has not been scope to conduct many in-depth interviews with those living with a dementia, the views of 19 people living with a dementia who are participants in arts projects have so far been gathered using the short, structured questionnaire developed for Mark Making. Information captured by the questionnaire will be visually represented in the final report.
In addition, we held a focus group with 5 people living with a dementia, had one in-depth face to face interview and several telephone interviews with participants of the arts projects. Several more PWD will be interviewed during the course of the project.
A number of recurring preoccupations emerged from the in-depth interview and focus group and also from conversations that the researcher had with participants during the sessions and from telephone interviews.
- Young and old
Participants from both Visual to Vocal and Music for Thought made unprompted comments about how much they enjoyed the intergenerational character of the activities.
- Group identity
The projects provided an opportunity to become part of an alternative group that was engaged in a structured activity distinct from the everyday routines that define normal life. One participant eloquently articulated this sentiment: ‘We became a little group within ourselves.’
- New skills?
We were interested in whether participants had learnt new skills during the course of the project. This question seemed one way of assessing the impact of the arts projects – whether participants are expected to expand their knowledge or experience of various art forms.
However, it was notable that in the interviews and focus group, none of the participants (for either Visual to Vocal or Music for Thought) felt that they had learnt new skills during the arts projects that they attended.
Neither of the arts projects focused on reminiscence. Rather, they were both structured around particular activities (creating a song cycle and music making) that demanded an engagement with the present moment.
However, there were a number of occasions when songs or music prompted memories.
- Process and product
Visual to Vocal ended with a public concert that was held in the Dulwich Picture Gallery and the final session of Music for Thought included a recording of the songs the group had learnt and created together. In both projects, the sessions were leading towards a defined end-point. The Mark Making team was curious about the relationship of the process to the final product. There were also possible implications for certain participants who may have felt anxious about performing to required standards.
- Space and time
The actual physical space in which projects took place was explored with participants. In addition, the ability within projects to create new spaces: for relationships, for self-discovery, for feelings was also apparent.
Focus group with participants of Music for Thought
Illustration & Design by Keara Stewart