Community Makers: a toolkit for getting your groups online

During the June Meeting Centre webinar we heard from a range of people who are involved in getting people online in different ways.

First up was Matt Harrison, Senior Designer at UK Dementia Research Institute Care Research and Technology Centre, Imperial College. To provide some background to their online work, Matt told us about a project they’re working on which is using a range of sensors in the house to look at how changes in the behaviour of people with dementia living at home can help to detect infections, prevent falls and identify agitation. They are currently working with a cohort of around 50 people with dementia, together with their primary carers, but the current situation means they are not able to meet face-to-face or in groups as they would normally do. However, they have been continuing to communicate with them though throughout lockdown and keep them up to date about the project.

One way that they are keeping in touch is through launching ‘Minder Meeting Place’, an online meeting place for the cohort to come together. It uses the Starleaf platform, which has video call capabilities and makes it possible to facilitate group sessions and activities. They are planning to hold regular events with the cohort, such as coffee & ideas sessions, mindfulness classes and project updates via video calls. The first meeting took place with 6 people, which was felt to be a good group size that enabled everyone to be involved. They also found it useful to have a focus for the sessions to give people a project-related reason for attending, but also allow time and space for more general conversations as an informal form of peer support. Some connectivity issues were experienced, so some learning to take forward is that it would have been useful to hold a test call before the actual meeting.

What worked well

What didn't work well

Next up was Tim Shakespeare, Senior Innovator with the Alzheimer’s Society’s Innovation Team. Tim told us that the team is working to understand the challenges faced by people living with dementia and developing new ways to overcome those challenges. Examples of past work by the team are the Bring Dementia Out initiative, and the Lift the Lid workshop-in-a-box looking at sex, intimacy and relationships.

At the start of the COVID-19 lockdown, the team put out a call to identify the challenges that people with dementia were facing. Out of this has come Community Makers, a way of providing practical support to help groups get online and continue supporting people with dementia and their carers. The website is currently in development but will run alongside a mutually-supportive network of people who can share their own experiences. The aim is to provide practical advice on choosing the right software to use, as well as share ideas about the different types of events people could hold online and how to go about this. The team is also looking to create a checklist to help people when they are starting out, as well as sharing examples of what people are doing and how they have overcome any difficulties. As part of the work, the Team have formed a focus group of interested parties and a ‘slack workspace’ which is essentially an online forum that gives people the ability to ask questions and share their experiences.

Looking forward, consideration is being given to scaling up the work and what will happen when face-to-face groups are possible again. What will be the role of online groups? Tim also encouraged participants to become part of the Community Makers project if they are interested.

Community Makers

Following on from Tim was Peter Ley, telling us about Reflections, which is currently running an online friendship group. Back when lockdown was looking imminent, the potential of using Zoom to run Friendship Groups online was recognised. Indeed, it has proved so popular that sessions have gone from being held once a fortnight to weekly. The sessions are facilitated and led by one main person, but carers and people with dementia are invited to get involved in delivering the sessions, taking the lead at different times. This could involve reading a poem, telling jokes, leading a craft session, running a quiz, giving a short talk etc.

When considering what went well and what could be learnt from the sessions, it was found useful to run test sessions with new people the day before a group session in order to iron out technology issues. The sessions will continue for the foreseeable future, but there is also thought being given to what will happen as it becomes possible to transition back to the face-to-face groups.

What works well

Unfortunately technical issues meant that we weren’t able to hear from the final presenter, Claire Powney from Dementia Matters Here (DMH), which is quite ironic given the topic being covered! However, we can give you a flavour of what she was planning to cover. Dementia Matters Here was founded to address gaps in dementia support provision in Herefordshire, and support the Herefordshire Dementia Action Alliance to carry out its actions. As the country went into lockdown, DMH decided to set up a county-wide online Meeting Centre using learning from existing Meeting Centres, many of which had transferred some of their activities online. However, unlike an existing Meeting Centre, the DMH one would be recruiting new members rather than starting with an established group of people who already knew each other.

Despite worrying that the facilitators would be the only ones there, the first session went well with 7 people joining in. Further sessions have also successfully been run on a weekly basis, offering a variety of different activities such as show and tell, quizzes, reminiscence, and coffee and chat. Alongside the sessions, activity packs are offered, which can tie in with the activities taking place online. The positive response to the sessions has encouraged DMH to look at developing further online ‘Meeting Points’ across the county.

Dementia Matters Here

Good discussions took place after the presentations. An important factor to consider was the issue of enabling people to get online in the first place. Many older people do not have the devices or skills to set up a virtual connection to enable them to be part of online sessions, and while some can be helped by family members that’s not an option for everyone. It’s a challenge that many groups are facing, with some finding that they can only get a small proportion of their group involved online.

Tips from other participants included ways to make sessions work better:

  • Including animals during sessions can help everyone to relax and act as a way to break the ice a bit.
  • Allow time for spontaneity and conversations that might go off at tangent, for example conversations being triggered by seeing a picture in someone’s background.
  • Bring and tell gives everyone dedicated time and space to get involved in a session rather than being potentially talked over by more dominant participants.

If you would like to find out more about anything raised in this BYOL, please contact Shirley Evans.

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

Author: Association for Dementia Studies

We are a multi-professional group of educationalists, researchers and practitioners who are expert in the field of person-centred dementia care and support. Our aim is to make a substantial contribution to building evidence-based practical ways of working with people living with dementia and their families that enables them to live well. We do this primarily through research, education and consultancy.

Leave a Reply