Online Community Makers: innovating support for people affected by dementia

In my role as Programme Manager for the UK Meeting Centres Support Programme I was invited to represent the Association for Dementia Studies to work on a project looking at ways to support people living with dementia during this period of social distancing and isolation.  The project is a  collaboration between the UK DRI Care Research and Technology Centre at Imperial College London and the Alzheimer’s Society Innovation Team with our support.

The aim of the project is to explore and experiment with what it means to create an online community centre for people affected by dementia and share discoveries with other groups trying to reach and include people online. The result of this will be an online toolkit with guides, resources and tips around topics such as running virtual events, choosing software and including people without technology. The planned timescale for roll-out is the end of July 2020.

Community Makers

To inform the development of the toolkit a group of Community Makers was set up which meets up on a regular basis over Zoom and which shares ideas and feedback via Slack. The Community Makers are all at various stages in developing online communities and represent a range of different groups. There are members who have not started up a group at all and just thinking about it; members who have just started running an online group once a week and some who are running a range of different groups and have been since the start of lockdown with a small number prior to that.

Some of the Community Makers are part of the Meeting Centre network and include those providing a range of different online sessions:-

    • People with dementia and carers activity groups including seated exercise, singing, poetry, felt making and quizzes.
    • Carers groups.
    • Smaller groups of tea and chat.
    • 2-2-1 support which also enables carers to have time to themselves whilst still being in the background.

Often these are supplemented with a range of approaches such as regular telephone calls, activity packs (some incorporating cognitive stimulation therapy), FaceTime and WhatsApp calls. All of these are very important in any case as not everyone has the technology, connectivity or desire to engage in such means of communication. More recently physically distanced visits in the garden and walks are taking place.

There are plans to expand the Community Makers group soon as we realise that there are many others with expertise and interest in this area.

Case Studies

This project will be following the set up of two online communities. One of these will involve a cohort from UK DRI and will be using StarLeaf as their virtual platform. The other group is from Herefordshire, where I live, and has come about because of my interest and involvement with local dementia initiatives. This group has started from scratch and members have never met with each other before. We decided on Zoom because that is what most people are used to for family and friends, however we recognise that StarLeaf has a range of useful features and is easy to use. Other online platforms are available!

We are calling the Herefordshire group, ‘Herefordshire Online Meeting Point’ because it has the ethos of a Meeting Centre and there is the aim for it to expand in time to become face to face and to become a fully-fledged Meeting Centre. What is interesting is how quickly, with weekly one-hour sessions, the group has jelled and how easily conversation and discussion flows.

Moving forwards

I have been privileged to be part of a number of online support meetings for people affected by dementia over the last three months and I find that online is not necessarily a reduced experience. Clearly some of the people in the meetings would not have been together without Zoom but some would not have met. There is something quite powerful about the medium and I think it is because people are in their own home so they may be feeling more comfortable and in control of the situation. I do believe strongly though that online support should not be automatically seen as a substitute for face to support but is complementary, however in some cases it may suit certain people better in certain circumstances. There are a lot of similarities and lessons to be learned from implementing distance and online learning (more of that in another blog). There are already plans to extend the Herefordshire initiative based on early feedback and experience, for example a separate carers group, and this will be a case study for the new online toolkit.

I am planning a number of blogs over the coming weeks about this project and related topics. If you would like to read more about Community Makers and the Toolkit please see blogs by Matt Harrison (Senior Designer in the Helix Centre – Imperial College)

Creating an Online Community Centre — responding to needs of people affected by dementia during the COVID crisis

Getting virtual — defining the needs of an online community centre.

Matt will be leading our monthly Meeting Centres BYOL webinar on Friday 26th – please join us here at 12.30 pm for 45 minutes  June 26th 2020

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




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