PRACTICE EXAMPLE - MOST SIGNIFICANT CHANGE
Using MSC to evaluation Dementia Friendly Communities in Wigan
By Imogen Blood
Introduction to the project and its evaluation
The Dementia Friendly Communities (DFCs) initiative in Wigan is commissioned by Wigan Council and Wigan Borough Clinical Commissioning Group in Partnership with North West Boroughs Partnership NHS Trust Later Life and Memory Service; and Alzheimer’s Society. The initiative began in 2013, and delivers a small grants programme to fund a wide range of activities which include and engage people living with dementia and their family carers. The funded activities are selected by citizens and professionals, delivered by community groups and local businesses, and administered and supported by the council. The initiative is part of a wider re-organisation of public services (‘The Deal’), which includes asset-based work to strengthen community support and service integration in localities.
Imogen Blood & Associates (working in partnership with Innovations in Dementia) were appointed in 2017 to conduct an evaluation of the initiative, which aims to promote health and wellbeing, reduce stigma and other barriers, and delay more expensive forms of health and social care.
For the first 18 months of the evaluation, we took a fairly traditional approach to collecting data about the programme and its impacts. We brought together all the monitoring data relating to funding and activity; we facilitated a session with the commissioning partnership to better understand their objectives for the programme; we visited a range of sessions, observing and conducting ad hoc informal interviews with attendees, and supplemented these with phone interviews with activity leaders and a range of professionals. We produced a comprehensive interim report presenting the findings from these activities and a series of cost avoidance case studies to explore and evidence cost effectiveness.
In the second half of the evaluation, we decided to introduce Most Significant Change (MSC) methodology.
We were finding it difficult to define ‘the intervention’ and ‘the beneficiaries’ in this complex, multi-faceted programme: we wanted to find a way to capture what we had begun to term the ‘ripple effect’ where connections between people and different initiatives were producing unexpected outcomes, and creating a whole which felt greater than the sum of the parts.
We had seen much good practice evolving in Wigan, including the creation of a group to empower people living with dementia; but we felt that there was a need to raise the profile of the initiative and bring stakeholders together to create a more strategic focus moving forwards. MSC gave us the opportunity to model this rather than simply recommend it.
Story collection: we worked with the council officers to identify a mix of individuals who had stories to tell about the programme and were willing to tell them. We conducted a series of further visits to people living with dementia and their families at home; to volunteers, businesses and services that had been involved in the initiative, and to existing groups. We asked people to tell us about the Most Significant changes that had resulted from the DFC initiative for them. We wrote up these stories and also re-visited some of the individuals, groups and stories from the first phase of the evaluation. We produced 20 stories in total.
Story discussion: we facilitated 4 story selection panels between October and December 2019. At these, a total of 26 diverse stakeholders met and were facilitated by the research team to discuss what a selection of the stories meant for them and for the future development of DFCs in Wigan. We asked them to try and choose those which they felt best captured the essence of DFCs in Wigan. The groups included citizens, council officers, elected members, health and social care professionals. We ran a separate group for members of the Summat to Say group (of people living with dementia), facilitated by Steve Milton of Innovations in Dementia. We ran a parallel session in the next room for their partner/ family carers.
Feedback: from each of the discussion groups, we produced and distributed a feedback report, which presented the group’s commentary on each of the stories discussed and the overall learning they had collectively drawn from the programme to date.
The final story selection group included elected members, senior managers and the chair of the Dementia Action Alliance. Together, they had the opportunity to reflect both on the stories which had been selected and the key messages highlighted by people living with dementia, their family carers, volunteers and professionals. This influential group was facilitated in real time to develop their own recommendations for future strategic priorities from the collective learning prompted by the stories.
Learning about MSC which could benefit others
The panel discussions created a buzz around the initiative and attracted busy and often senior people who might not have found the time to read a research report. We also witnessed some live ‘culture shifts’ taking place during the discussions about the stories. For example, participants (mostly professionals working across health and social care) in one panel discussed a story told by a member of the Summat to Say group, in which he described how the group had been able to influence the re-design of a range of local services and businesses – including the Post Office, the cinema and the rugby stadium. The professionals were struck by the existence and input of the group, and some reflected that they could do with the group coming to review their services in this way. As they discussed the remaining stories, they began to question whether people living with dementia had been meaningfully involved and critiqued some examples for feeling ‘top-down’. If we had simply made a recommendation in a report that the voices of people living with dementia should be at the heart of all such initiatives, it is quite likely that many would not have grasped this in the same way (or even read it at all!).
We had boldly sought to involve people living with dementia, not only in telling us their stories, but also in reflecting on the collected stories. This was even more challenging than we had anticipated! The group was skilfully led by someone with a wealth of experience of facilitating groups of people living with dementia, the transcript contained many valuable insights into what mattered to these individuals. However, many in the group found it challenging to retain the information from the stories so they could reflect on them and select from them meaningfully.
Capturing what mattered to people with dementia was critical to the evaluation; however, we were not convinced in the end that trying to do this through story selection was the best way to elicit this. Certainly the stories (which were between half a page and one page long) would need to be much shorter and just contain one simple idea. Reading and discussing these one at a time, could be a useful prompt for discussion; but trying to review half a dozen of these, and go back at the end to select one, was difficult for a number of the group.