Having completing the art interventions across the study by December 2015, we have now moved into the analysis phase of the research. Here’s a quick update on progress across the study:
Behind the scenes
The research team spent the first few months of the year checking through all the data and preparing it for analysis
We welcomed a new member to the research team: Bruce Davenport will be working with Andrew Newman at Newcastle University as Anna Goulding takes up a new post at Manchester University. The team have also benefited from the quantitative research expertise of Karlijn Joling from the VU Medical Center, Amsterdam, who visited for three months at the beginning of 2016. Karlijn will return later in the year to assist with bringing the quantitative data together with other forms of data from the research.
Sharing our findings
Initial findings from the data will be shared at several conferences during the second half of 2016.
Professor Andrew Newman presented at the British Society of Gerontology conference, in Stirling, 6th – 8th July.
Dr Catrin Hedd Jones, Dr Carys Jones and Dr Teri Howson will all present at the Alzheimer’s Europe Conference, in Copenhagen 30th October – 1st November.
Principal Investigator Dr Gill Windle will be presenting as part of a symposium on International Arts and Dementia Research at the GSA annual scientific conference, New Orleans, Lousiana, USA, 16-20 November 2016.
Dementia and Imagination received funding for three research artists from different practices to respond to the study through their artistic medium. These artists would not be delivering the art sessions but would observe and question the research. In turn they were tasked with creating a visual, creative response. Artists Carol Hanson, Jeni McConnell and Penny Klepuszewska have attended some of the art sessions, spoken with participants, family members and care staff and looked at some of the early research data, making creative responses to their findings. Some of this work has already been shown, with further opportunities to see this work coming throughout 2016.
Carol’s work, featuring her cartoon couple Doris and Ivor, was shown at both Bangor Pier and the Taste Academy in Rhyl, building on some of the work she exhibited last year at the International Eisteddfod and the Green Man Festival. Focusing on the humour that she observed in the art groups, Carol sought to use illustration and projected animation to show dementia in a new light.
Carol will be taking her work from Dementia and Imagination to the Lakes International Comic Art Festival in Kendal this October and Doris and Ivor’s cartoon front room will be the setting for the installation Number 3, Muddle Street at Einstein’s Garden at The Green Man Festival, Brecon Beacons in August. Their vintage car will also visit local car shows this summer and Carol will produce some cartoons based on her experiences within the project. This retrospective (working title- Doris and Ivor: Who?) hopes to mix both the humorous and more poignant memories of her time with the study as well as sharing the public’s own reflections on memory loss gathered during the duo’s Funny Summer.
Jeni developed a short performance piece in 2015 called When I think of you, I think of Sundays. Since then Jeni has been looking at some of the interviews from the research and developing ways of working using materials developed from her practice.
Penny continued to develop an extended creative text piece during 2015 which explores and responds to some of the research measures used by the research team and also includes her own observations and experiences from throughout the art interventions set within clinical environments in Derbyshire. Penny has also begun to incorporate photography by capturing portraits of all those involved in the research project, including hospital staff, participants, carers, family members and researchers, but also including members of a wider dementia-friendly community.
Engagement and Impact
We are planning exhibition and installation activities for the second half of 2016 with further details to come soon. This is with the aim of challenging perceptions, creating knowledge exchange and maximising the impact of the research.
We continue to gather evidence of the project’s impact, for instance on policy or practice, to understand the reach and effect of our work so far. The team attended the Utopia Fair at Somerset House from 24th – 26th June. Three of the artists who delivered the art interventions shared some of their creative activities with the idea of discussing ‘dementia friendly futures’. The activities were inspired by local workshops held in Newcastle, Derbyshire and North Wales in April and May which brought together groups of people including school children, health professionals, care staff, people living with dementia and their relatives to consider a utopian vision for inclusive communities for people living with dementia.
The team will also be in residence for a second year at the Green Man festival, Brecon Beacons in their Einstein’s Garden area, with a new installation by Carol Hanson.
One of the areas of interest in this study is whether the community impact of arts activities, via social networks, may have the potential to break down stereotypes and reduce stigmatising behaviour towards people with dementia. Therefore, we have sought to determine, by using social network analysis, how the perceptions and beliefs of artists and other professionals engaged in the project influence both the community of place and community of practice, and whether this creates a positive and sustainable effect.
This is a relatively untested method of analysis in this field and there is little academic literature to guide this process. One similar study took place in the Midwestern United States in the 1950’s, by Coleman and colleagues. In this study they sought to observe the acceptance of a new drug by General Practitioners in the area, and to understand how adoption rates spread throughout their community of practice by gaining information on the doctors’ social network.
For Dementia and Imagination, we used an online questionnaire as it was considered the most effective approach to reach the geographical area covered by the study and also to reach the number of participants needed to carry out this type of analysis. As part of this questionnaire, each of the intervention artists and other professionals directly involved with the study has been asked to name those people whom they discuss professional working practices with in the course of an ordinary week, and also to provide us with their email addresses. Those named have also be sent a questionnaire and asked to do the same, and so on. From this information, we can begin to build a picture of social networks that will elucidate the mechanisms of social contagion at play.
These data have been uploaded on to UCINET and NetDraw software, which presents a visual representation of the networks in question, and also provides us with the ability to undertake several analytical procedures. For example, by using this software, it will be possible to identify whether some people’s opinions have a disproportionate influence on others and whether this social contagion is influenced by others’ opinions of the art intervention.
The way in which information and new practices diffuse through different communities will be of interest to researchers and policy makers alike, and could assist in the development of new interventions in the field.
Last year we shared a brief overview of our work to evaluate the economic value generated during the Dementia and Imagination study. To recap, Social Return on Investment (SROI) analysis is a method that assigns a monetary value to the inputs (e.g. time and materials) and outcomes of the study (e.g. the impact on wellbeing and changes to engagement with the local community). We consider the effects on not just the people taking part, but also the broader impact on their families, and for participants in care home settings, the impact on carers.
For this part of the research, we used a mixture of tick-box questionnaires and open-ended interview questions. It is important in every study to make sure that the data collected is of the highest quality, so after the final round of interviews with participants had taken place the research team had the challenging task of ‘cleaning the data’ for the three study sites.
For the open-ended interviews, this involved transcribing, anonymising and checking many hours of recorded data. For the tick-box questionnaires, the data cleaning involved making sure that all of the information was entered correctly for each participant and that any missing data was truly missing rather than being an input error. Data cleaning for a study the size of Dementia and Imagination was a considerable task, and hats off to the research team for their thoroughness!
So where are we up to? As of early summer 2016, we are part way through the economic analysis with an aim of completing it by the end of the summer.
We have identified the core outcomes that occur as a result of taking part in Dementia and Imagination and we are at the stage of reviewing individual level data to see what proportion of participants, their families and carers experienced each of the outcomes. We can then assign a financial proxy to the data. For example, according to the HACT database of social value indicators (http://www.hact.org.uk/social-value-bank), the financial value of good overall health in people aged over 50 is £20,323 per year, whilst feeling that you belong to a neighbourhood has a lower value of £3,753 per year.
We have a busy few months ahead completing the analysis and writing up the results. We can then turn our focus to getting our findings out there and making sure they are made available to the widest audience possible. As well as our study website, newsletter and social media sites we will be out and about at various festivals and conferences later in the year- one of the highlights being the Alzheimer Europe conference taking place in Copenhagen in November.
We are looking forward to meeting as many people as possible and hearing your thoughts about the study- and arts and dementia more widely. If you see us at any upcoming events, please come over and say hello!