It’s all about the research!

The penultimate Meeting Centre webinar took place on 28th October with a focus on research and data collection, and it captured a range of different perspectives. Following a welcome by Interim Director Dr Shirley Evans who has been heavily involved in Meeting Centres for the past eight years, the first presenter was Jen Bray, Research Assistant at the Association for Dementia Studies (ADS), who provided an overview of research around Meeting Centres. She began by looking at the first research project back in 2014 which build on original work from the Netherlands and brought Meeting Centres to the UK. The research identified multiple benefits to both people with dementia (members) and their families (carers), and provided the evidence that Meeting Centres aren’t just a nice idea but do actually make a difference.

Image showing a slide which has a summary of the key findings from the previous Meeting Centre work

Jen continued by looking at subsequent research projects helping to promote the spread of Meeting Centres and embed them in their communities, as well as those where Meeting Centres may not be the main focus but involved as a place to host or deliver various interventions. For example, in the Leominster Meeting Centre Heritage project the research was not about Meeting Centres, but was about local artists coming in and working with Meeting Centre members on individual projects. Looking ahead, Meeting Centres are also being included in future research bids, some of which are currently being developed and others are ones we’re waiting to hear back about. Jen recognised that it’s important to be aware not to overload Meeting Centres by being involved in too much research, but at the same time balance that risk against the benefits of research. Some projects can provide additional funding for Meeting Centres, and also provide exciting opportunities for members and carers to try new activities and have different experiences.

Image of a slide showing a variety of past and present research projects involving Meeting Centres, plus a bit to say that Meeting Centres have a role in future funding bids

A key factor of research is getting the data to provide supporting evidence, but it isn’t always easy for Meeting Centres. It’s impractical for ADS to do the data collection by visiting each Meeting Centre across the UK, especially as the number of Meeting Centres is increasing, so it falls to the Meeting Centres themselves to collect data. To help Meeting Centres we have developed a toolkit of data collection forms and information, including a wider suite of forms to support Meeting Centres if they haven’t got anything else in place, such as a ‘Getting to know you’ style form for members and carers. Jen also delivers online sessions to talk through the data collection forms and process and the team are always available to help with any queries. It was important to note that when ADS was deciding what data we recommend Meeting Centres collect, it was based on what has previously been asked for in funding bids as it needs to be useful for Meeting Centres as well as providing research evidence.

In terms of the data collection, Jen talked briefly about the five main areas, which cover basic attendance and demographic data about new and leaving members and carers, the impact of Meeting Centres on people’s wellbeing, what people like about Meeting Centres and where there may be room for improvement, case studies to provide a human angle as supporting evidence for funding bids, and important contextual information to see how Meeting Centres relate to their local community.

Image of a slide showing the five main areas of data collection

Jen concluded her part by looking at how data collection helps Meeting Centres. By acting as a central hub for all of the data, ADS is able to provide summary reports back to Meeting Centres to feed into their funding bids. This can be about an individual Meeting Centre, or giving the wider UK picture, so the data benefits a whole host of current and future Meeting Centres. It also helps more broadly by feeding into other projects, which neatly tied in with the next part of the webinar which was led by Dr Ruby Swift.

Ruby is working on a particular Work Package within the ‘Get Real with Meeting Centres’ project, which has a focus on seeing who is and isn’t been reached by Meeting Centres, and the potential barriers preventing people from attending a Meeting Centre. This part of the work draws on the attendance and demographic data captured by Meeting Centres, with a focus on those in Herefordshire and Worcestershire, and compares it with government, Local Authority and NHS data. In addition, Ruby talked about the interviews and focus groups she’s been conducting with people with dementia and family carers who don’t attend Meeting Centres, Meeting Centre staff, and health and social care professionals to capture a range of perspectives.

Image of a slide showing the research questions for the Get Real project and the Work Package Ruby is working on

Ruby is still in the process of analysing all the information but shared some emerging findings based on the available data, recognising that some records are incomplete and different Meeting Centres have been operating for different periods. The findings are shown on the slide below.

Image showing a slide of the initial findings from Ruby's work, such as 76% of members were aged 75+ at the time of joining a Meeting Centre

In terms of next steps for the work Ruby is doing, she’s going to be producing a report on the demographic data, including a map to show where people who attend Meeting Centres live. She will also be analysing the interview and focus group transcripts to explore the themes and findings around potential barriers to attendance in order to develop a set of recommendations.

Following on from Ruby was Sally Dance from the Evesham and District Meeting Centre, who talked us through the data collection activities they do and some of the challenges and benefits they’ve encountered. At the Meeting Centre the team completes daily forms to capture member and carer attendance, and these feed into a monthly summary which is fed back to ADS. They also used forms from the wider toolkit to get to know members and carers when they first join the Meeting Centre. The team has put in their own GDPR (General Data Protection Regulation) processes with a privacy notice to cover any information that they record about individuals.

Once members and carers have settled in at the Meeting Centre the evaluation forms are completed (with people who want to get involved as they are voluntary), and these are repeated every six months. These repeated forms are combined with the satisfaction forms to find out what people do and don’t like about the Meeting Centre. Sally felt that the forms are valuable as they help staff to know what is going on and see changes over time.

However, they have experienced a few challenges around data collection, with time being the main issue. At Evesham they have quite a big team, but Sally could see that in smaller teams with fewer staff and volunteers it would be difficult to collect data. Sally also recognised the importance of getting to know the members and carers as this makes it easier to know whether it is appropriate for some individuals to get involved. For example, if it would cause stress or distress for people, if carers live a long way away, or if personal situations would make it too much of a challenge. It was also useful for Sally to acknowledge that answering the data collection questions can sometimes be emotional for people as they may make them reflect on their situation and what is going on.

Despite these challenges, Sally also recognised that there were also lots of benefits of being involved in data collection. For example, people can enjoy spending time with staff one-to-one and having the opportunity to talk about how they feel and what they enjoy. It can help to provide reassurance, build confidence, and give people a sense of worth as their voices are being heard and valued. The data collection toolkit also helps staff to assess a person’s journey and see changes over time. In addition, data collection activities can help staff to pick up on and explore potential issues, and maybe even offer a route in to addressing them by providing the space and opportunity for members and carers to open up and talk about any concerns.

Overall, Sally found that data collection was valuable as it helps to shape Meeting Centres now and in the future, but appreciated that it does need some thought put into it rather than just charging in.

Graham Galloway from Kirrie Connections Meeting Centre was the final presenter and began by echoing the points Sally had raised. The main data collection contact at Kirrie Connections is Jacqui Dillon whose previous background and skill set was very useful in terms of helping the Meeting Centre get to grips with their data collection activities. They use the same toolkit as the Evesham Meeting Centre, and have also put in place a data sharing agreement and process to support work they do with other organisations and referrers. The Meeting Centre has recently implemented CharityLog, which is a database to support them with capturing and recording their data. It has streamlined their data collection and reporting, and also helps to flag up when repeated forms are due to be completed.

Graham said that the data and research evidence has been helpful when getting buy-in from funders and the Scottish Government, especially as statutory funders tend to be focused on quantitative information. He had recently asked Jen at ADS for a report to cover specific information in a particular format as requested by a funder, and shared some of the report during the webinar. As well as being important for funders, this has been very useful for the Meeting Centre as it has helped to flag up potential issues that they may wish to investigate. For example, why some members may feel less engaged in being asked what they would like to do.

One interesting point raised by Graham was around difficulties in getting baseline data collected, as although staff have to judge when it is appropriate for individuals and don’t want to bombard them with paperwork, they also don’t want to leave it too late as they can see an immediate difference in some people when they walk through the Meeting Centre door on the first day.

Thanks to everyone who presented and shared their thoughts. If you would like to find out more about the Meeting Centre data collection you can have a look at the relevant page on the Meeting Centre blog site. A recording of the webinar is also available if you missed it or want to watch it again – link to recording.

The final webinar in the Meeting Centre series will take place on 25th November, 12pm, and is called ‘Standing on the shoulders of giants’ where it will be looking at where we’ve come from, what’s been achieved so far and what’s next. Please see the website for more details.

Connect with ADS on twitter @DementiaStudies and on Facebook @adsuow


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