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People affected by dementia have been amongst the worst hit by COVID-19 in terms of their health and wellbeing. Our ‘supergroup’ of Alzheimer’s Society’s Innovation team, the UK Dementia Research Institute (Care Research and Technology Centre) and the Association for Dementia Studies (University of Worcester) have been working together to help people affected by dementia to feel less isolated and better supported.

What is a Community Maker?

A Community Maker is anyone with experience or interest in setting up online communities and groups for people affected by dementia.

How can Community Makers help people affected by dementia?

By providing ‘Community Makers’ with the tools they need to set up or move their groups and communities for people affected by dementia online, we can help to increase reach, address people’s health and wellbeing, and reduce social isolation.

We hope this will be beneficial, not only during the current pandemic, but in the long term for people who cannot access face-to-face services and groups in their communities.

What have we been up to?

In our previous blogs on the project (29 May and 4 May), we shared insights from speaking with people affected by dementia and service providers around the impact of lockdown on them, and ways in which to help people connect.

Chris Maddocks, one of our Alzheimer’s Society Ambassadors who is living with dementia, said, ‘I’ve been thinking of it that this sudden lockdown is almost like a bereavement, because one minute you are being socially active, and you are doing lots of things, and the next thing – I was literally on lockdown.’

Since then, we have developed and co-designed two solutions that we now want to share with you:

  1. The Community Makers Network
  2. The Community Makers online toolkit

What is the Community Makers Network?

The Community Makers Network is a mutually supportive network for anyone with experience or interest in setting up online communities and groups for people affected by dementia. The network allows people to share knowledge, ideas and challenges with each other through online meetings and an online forum.

Community Makers on Zoom

Who might you meet in the network?
We have gone from 15 people in the original focus group to 50 Community Makers in the network, all who have been key in guiding the development of the project. We have been speaking with people from a diverse range of backgrounds, cultures and locations – from Swansea to the USA!

Community Makers you might meet in the network include: A Trustee of a Herefordshire-based dementia support charity, an Alzheimer’s Society Research Network volunteer with lived experience of supporting someone with dementia and extensive remote facilitation experience, a scientist exploring starting a group back home on Shetland, and a group facilitator supporting people affected by dementia from Black, Asian and other minority ethnic backgrounds.

CM members directory

Engaging with people running diverse dementia groups has been extremely valuable in understanding additional barriers being faced in moving online and to help ensure resources are accessible and culturally sensitive. This week, we spoke with people who run groups from within Black, Asian and other minority ethnic communities (including Irish and Jewish), LGBT+ communities and younger people with dementia. The importance of including people who do not have online access was clear from these conversations. ‘Within the Irish community and including travellers (but not unique to these communities), there is a very practical barrier. People may not have internet access and the technology, and cost is also a significant factor.’ This is something that we are working together to address through our online toolkit.

What is the Community Makers online toolkit?

The Community Makers online toolkit is a digital resource to enable people to move or set up dementia support communities online. 

Community Makers online toolkit

The content and design of our online toolkit for Community Makers has been informed by the insight and learning gathered from individual conversations and virtual workshops with people affected by dementia and the Community Makers Network.The toolkit has also been guided and co-created through the experiences of new ‘digital first’ support groups for people affected by dementia. Set up by our project partners, ‘Dementia Matters Here(fordshire)’ and the ‘UK Dementia Research Institute cohort’ have prototyped new ways of engaging and understanding the opportunities and limits of digital approaches.

What does the toolkit include?
The toolkit contains useful information and examples which people can take inspiration from and find something that works well for them in their setting, including:

  • Guides on various aspects of running an online meeting place or community centre (for example, how to include people who do not have access to technology)
  • A checklist on how to start an online community or group, signposting to useful resources.
  • Templates and ideas of different types of events that a group might hold.
  • Insights from groups that have set up online communities – sharing both successes and overcoming challenges to give people inspiration of what is possible.
  • A directory of members from the Community Makers network.
  • A blog space to keep up to date with the project.
  • A contact page to find out more and get involved.

The toolkit is now publicly available for you to take a look at
Please note that it is still in development, as we add to it from our continuous learning.

CM checklist

What might you learn?

Here are a few insights so far from some of our Community Makers. You can read more on our insights page on the digital toolkit. 

  • Preparation is key –  Prior to the session, ‘a talk with the person wishing to join-in, a simple written explanation of what to do (with pictures, if possible) and an end-to-end run-through of a meeting all helps.’
  • A hybrid approach – ‘Creating pre-recorded sessions with elements of personalisation is an effective way of including people at a pace and time that they are comfortable. And we have also found that the videos are beneficial and watched by a much larger audience.’ 
  • Keeping the group size small – no more than 12 participants. ‘We have had a couple of sessions where there have only been four participants and these have turned out to be some of the best we’ve run, with members really opening up about themselves, their lives and past careers.'
  • Helping to make getting online accessible – ‘Through a Community Makers discussion on the best approach, it was agreed the solution should include personalised, pictorial step-by-step how-to guides – device specific. These guides can then be printed and delivered to people in their homes for them to follow as a manual while learning how to use their device.’ This Community Maker has worked with another member of the network and together, they have developed a skeleton ‘how-to’ guide template for Android tablets to share and disseminate with others who need it.

What is next for Community Makers?

We want Community Makers to be used as widely as possible and we are exploring opportunities for scaling. We believe that resources like the Community Makers Network and the online toolkit will help improve and grow online provision and support many people who want to set up online communities but do not yet have the knowledge or confidence they need to do so.

The pandemic is still gathering pace, and there continues to be a high demand for digital support. We need long-term sustainability of online communities in preparation for future lockdowns, particularly as people affected by dementia are likely to be amongst the first to re-enter isolation if struck by future pandemics. We need to equip people with digital skills and understanding, through existing and trusted relationships. And when finally, face-to-face services are available, we need to remain connected with those who cannot access support in person. We need to accommodate an inclusive hybrid approach to support digital connection and physical meet ups so that all people affected by dementia feel less isolated and are better supported.

How to get in touch

  • Are you a ‘Community Maker’ and interested in joining the network and being part of this project?
  • Are you interested in helping us to scale ‘Community Makers’?

Please email us on hello@communitymakers.co

Over the past 18 months the Alzheimer’s Society Innovation team has worked with the RAF Association to understand and tackle challenges that people in the serving RAF community face when caring for family members with dementia.

Together, we ran an innovation sprint to learn about the topic, investigate the experiences of serving personnel and their relatives, find a range of creative solutions and experiment to test out the most promising ideas.

Navigating Dementia

We’re delighted that the RAF Association is launching the outcome of this innovation project today. Navigating Dementia provides an online hub created specifically for people in the serving RAF community who are caring for family members with dementia.

It complements the support already provided by the RAF, by linking people with other RAF carers and families affected by dementia, providing a vital knowledge hub and steering people towards further resources and support. The online hub was created with generous pro-bono support from CGI, a leading defence and security software and IT services supplier.

Making a difference to carers and people with dementia

Colin Capper, Head of Research Development and Evaluation at Alzheimer’s Society, said, ‘We’re delighted to see the launch of this new online hub, which will make a huge difference to the dedicated carers of people with dementia in the RAF family. Our Innovation team worked closely with RAFA to tackle the real-life challenges faced by people affected by dementia within their personnel.’

‘Getting access to crucial face-to-face support services is difficult for many carers, particularly during the current pandemic which has hit people with dementia hardest. ‘Navigating Dementia’ is a fantastic example of a practical solution. This online hub will make the world of difference, not just to the carers themselves who may be feeling isolated and struggling to get respite, but to the people with dementia they care for.’

Responding to people’s needs

RAF personnel who have caring responsibilities face particular challenges. Frequent relocation and deployment means that many RAF families are caring for a parent with dementia when not living close to them.

Rory O’Connor, Director of Welfare and Policy at the RAF Association said ‘We knew from our research and pilot projects that members of the serving RAF community wanted to be able to find relevant information in one place and to link with other people in similar circumstances. So we have created a forum to discuss topics, ‘ask the expert’ webinars, an events calendar and opportunities to plan self-supporting groups and meet-ups. There are also links to resources and information, regional breakdowns of dementia support, space for people to share their stories and answers to frequently asked questions.’

Increasing support

The drive to improve support for carers of people with dementia, catalysed by this innovation project, is set to grow further over the coming year. The RAF Association has plans to broaden the reach of the online hub to the wider RAF community, supporting veterans as well as serving families.

Later this year, a second phase of the Navigating Dementia project will begin, building on another solution developed through the innovation process. This will being face-to-face training courses for serving RAF personnel and their managers, generously supported by the RAF Association’s High Wycombe Branch.

The Alzheimer’s Society Innovation team is proud to have played a part in helping the RAF Association achieve its goals of creating new ways to support carers, and we are looking forward to hearing about the continued impact this work will have in the coming months and years.

We need your help

Our Innovation team is only able to support these projects thanks to people’s generous donations to Alzheimer’s Society. If you find this work valuable and interesting, please help more people find out about it by sharing this blog post on social media, or even support us with a donation.

As with anything in innovation, we are working quickly and responding to the changing needs and climate all the time.

In one of our last blogs, we shared that we’ve been working with the Helix Centre at Imperial College London (also part of the UK Dementia Research Institute Care Research and Technology centre) and Meeting Centres to innovate to help people affected by dementia remain connected and supported whilst in isolation.

At a time when face-to-face support services cannot take place in person, we want to help equip ‘Community Makers’ (people running groups or wanting to run groups online) with the tools they need to provide specialised, virtual support for people affected by dementia. Not only do we hope this helps people during the current pandemic, but in the long-term, we hope this will provide support to those who do not have or cannot access services and groups in their communities.

Through innovating virtually, we have been gathering insights from experiences of both people affected by dementia and group facilitators, and co-designing together as we want to ensure our solutions are based on their needs.

What are the key milestones we have coming up?

We are bringing together our ‘Community Makers’ focus group, and they met together for the first time on Friday 29 May. We have been discussing what would be most helpful for people who run services online and explore the current barriers in leading virtual groups and how to overcome these.

Screenshot of a zoom meeting with members of the Community Makers focus group

They are also feeding back on the solutions we are developing, which includes a web-based resource to help provide ideas, recommendations and guidance for people who are running groups. This may include support around: choosing technology, onboarding, different types of events for different audiences and purposes, online etiquette and good practice, how to include people without digital connection, governance and internet safety and so on. Within this, they will help to develop a community of ‘Community Makers’ to share insights, ideas and resources amongst each other.

Secondly, the Dementia Research Institute are engaged with a group of people affected by dementia who they are inviting to take part in piloting an ‘online community centre’. Whether they are interested in entertainment, arts and culture, physical exercise or looking for support and information, they will be able to join live group sessions and open discussions in the safety of their home through video and messaging functions.

We have our first ‘Coffee and ideas session’ coming up, which is being facilitated by one of our Alzheimer’s Society Research Network volunteers. From this, we’ll be able to get an understanding of people’s experience of being part of the online community centre and an idea of the type of sessions they would want to join in the following weeks.

Here is a mock-up of what an Online Community Centre may look like:

Online community centre prototype

In addition to working together closely with these groups over the next few weeks, we are piloting another online community centre with a new group of people affected by dementia being brought together virtually in Hereford in June (through Meeting Centres). This will all inform our ‘Community Makers’ solution which is looking to go live for people to visit at the end of July.

We’ll keep updating you as this piece of work progresses, and you can read more about this work through Helix's blog on Medium.

We have had a fantastic response to our emergency COVID-19 activity on the Hub with people sharing their experiences in the current crisis and their ideas for innovations which could overcome their challenges. A theme which has come out strongly is how social isolation is impacting people affected by dementia in the community.

Through the Hub, we were approached by the Helix Centre at Imperial College London (also part of the UK Dementia Research Institute Care Research and Technology centre)  who have risen to the challenge. Together, we are working to support networks and communities to get online and create meaningful connections through “virtual community centres”. 

The concept of this ‘virtual community centre’ is an online meeting place where people affected by dementia can come together to take part in a programme of interactive events and discussions through technology with video-conferencing capabilities and messaging functionality. We are currently evaluating existing platforms to assess their accessibility, as a simple and intuitive interface is required. Different means of communication in addition to video is preferable to allow for varying degrees of interaction. Sessions and discussions could include an art class, music, physical exercise groups, peer support for carers, and informative discussions about dementia.

Our aim is to work alongside existing networks and recreate, online, the core functions of dementia services and groups which are usually delivered face-to-face. We also hope to bridge the gap between digitally connected and unconnected members by incorporating offline activities and a potential buddy scheme.

The team is working at pace to build and test this concept. We are co-designing it with people affected by dementia and also group leads from existing services. By listening to their experiences, we can ensure the virtual community centre meets people’s needs appropriately and effectively. We’ve already had various conversations and virtual workshops to understand current gaps, what has been working well, and what needs improving. Over the next week or so, people affected by dementia and group leads will be trying out the technology and a programme of initial sessions pulled together from the feedback received so far.

We are excited to be working together on this and will keep you updated as it progresses!

Helix blog 1

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