#2 Getting virtual — defining the needs of an online community centre.
In our first post we looked at the need to help people affected by dementia reconnect online to help mitigate the impact of isolation during COVID-19 lockdown. Technology is both an enabler and a barrier to inclusion. So we must draw on its strengths and opportunities and consider how we can bring along those without the devices, internet connectivity and know-how.
In this post we explore the essential features of a dementia support community that we wish to bring online, and how various technology solutions can enable this.
Our aim with this project is to explore and experiment with what it means to create an online community centre for people affected by dementia and share our discoveries with other groups trying to reach and include people online.
It is clear that the impact would stretch far beyond the immediate crisis. Firstly, people affected by dementia are often vulnerable and will be in ‘lockdown’ for considerably longer than most of the population. Secondly, in the future many of us imagine situations like this returning. So when measures do ease up, we have an opportunity and obligation to prepare for the next occasion when we need to support people affected by dementia through remote means.
Community groups, medical clinics, and other support organisations must learn from what they would like to have done this time, and have skills, technologies and support in place for future situations. When restrictions are lifted, support groups may use the best of both real-world and digital, for a more resilient and accessible community.
In this ‘new normal’ we must encourage and support many to get online who weren’t previously and give them the confidence and skills to connect with friends, families and people who can support them remotely.
What is a community centre anyway?
As we have immersed ourselves in the process of designing a virtual community centre, we have spoken to variety of members and organisers of community groups for people affected by dementia. Many of them are in the midst ofadjusting and working out ways to keep up the connection remotely.
The process has raised some predicable challenges and surprising insights, but it has also been useful to think about what are the essential features of a community centre that must be preserved in the virtual incarnation. It’s also useful to uncover the potential benefits of doing things digitally, that weren’t possible in real-world scenarios, and embracing the opportunities.
When we return to physical meetings, it may be that we can create hybrids of the offline and online community centre, that provide greater value, and include more people.
We believe that the core aspects of a community centre that should be preserved in digital form are:
- A safe space
A community centre should be a place where you are known and can feel confident in the presence of the other members, while also being welcoming to new members. Members should be able to build trust and friendships to provide informal council and support to each other.
- Regularity and dependability
Members benefit from knowing that their emotional and physical investment in joining a centre will be rewarded by availability of regular meetings, and dependable support.
- Engagement and entertainment
Community centres can offer a break from the pressures that a diagnosis of dementia brings and a change of scene. Carers may stay and participate or use the opportunity of a protective group to spend valuable time away from the person they care for. Both are vital contributions to carer resilience and well-being for the person living with dementia.
- Leadership and facilitation
Managing any community centre needs experience and strong people skills to make sure everyone feels safe, welcome, and engaged. Creativity is important for involving people with diverse needs and ensuring that volunteers are adequately skilled and supported.
- Inclusivity and involvement in setting the agenda
Members of a community group should be setting the agenda and activities of the group in a collaborative manner, so that these reflects the group’s needs and give those who want more than a passive role a sense of purpose.
All the above have implications for how we go about creating an online version of the community centre. How big should an online group be to retain the sense of a safe space? How do new people join and feel welcome? How do you enable the small impromptu, but valuable interactions that take place outside of organised activities? Are these the interactions that lead to friendship, support and a reduction of isolation?
New opportunities in digital:
The enforced move to digital has unearthed some positives in terms of what is possible.
- Connecting through video from each other’s homes opens new levels of intimacy compared to meeting people in a neutral environment like a village hall. Seeing people in their own environment sparks a great sense of sharing, for example taking virtual tours of people’s gardens, telling stories of possessions in the house, playing and listening to music collections. However, this also makes the meetings more intrusive increasing a sense of vulnerability.
- Virtual meetings can include people who have previously been excluded by geography, transport, or physical disability. This also allows aging members to remain connected and participate for longer as their physical and cognitive abilities change.
- The online environment offers people ongoing ability to participate in the world when concerns relating to Covid-19 are eroding this ability to do so within physical spaces. This is important because physical spaces have hitherto offered opportunity for people to gather and exercise a collective voice to effect change. The move to digital thus strengthens the possibility for collegiate influence.
What should we look for in technology?
Unsurprisingly, in times of need, we reach for the tools we have to hand. We’ve seen that many groups of all varieties are using established tools, especially Zoom and WhatsApp, to coordinate and meet online.
But while these tools offer great functionality to groups, it is worth considering the shortcomings for our interest group, and if there is functionality that should be included to allow a community group to thrive online.
By way of an illustration, WhatsApp relies on smartphones, especially for video calling, meaning that users are not be able to benefit from the larger, more accessible screens of tablets and laptops. For many, WhatsApp is also ‘noisy’, full of endless notifications and chatter from many different sources.
Zoom on the other hand has concentrated its offering around specific events — discrete meetings — accessed via video calling (with the option to dial in on a phone). Only the first 40 minutes of a meeting are free. Yet it can take 20 mins to get everyone connected and online if the technology is not straightforward. We would argue that such events do not allow relationships to grow and flourish — they concentrate control within the hands of the organiser, and do not (on their own) facilitate many of the important aspects of social gatherings.
Below we describe what we believe to be the important elements to consider in choosing technology to support people affected by dementia. These suggestions are based on discussions we have had with community members and organisers. These needs could be met by a single ‘app’ or a small combination of apps working in a complementary way.
Video meetings are clearly where much of the value can be drawn from online services to reduce isolation. Seeing someone on screen can be nearly as rewarding as meeting someone in person (1). Video meetings can be more accessible in terms of including people with cognitive and hearing difficulties.
For people who have lost their conversational abilities, seeing the face of someone familiar is vital. However, there are factors that limit this as a sole means of engagement. We have heard from many people that having more than 8 people in a meeting intended as a mutual discussion can be very difficult for some users. They may struggle to follow the conversation or feel they can participate. This has led us to think more about different types of video-based meeting (watch out for our next post).
Furthermore, video requires high internet bandwidth, which many don’t have. Those without broadband internet, or high spec devices, could participate through a 3G connection and text or audio-based platforms, however, they may have a reduced experience. This might be ‘just’ disappointing or at worst put them off altogether.
Lastly, video meetings are synchronous — everyone actively participates at the same time and at the same pace. While this is wonderful, it is also a limitation of what can be achieved. Combining video with asynchronous engagements such as group text messaging can enhance and extend the power of the community.
Video meetings can be a central tenet of an online community if adequately supported by complementary functionality.
The potential for an online platform to address the challenges of isolation lies in its ability to create and strengthen relationships. Whether it is two carers finding moral support through exchanging shared experiences, or a small group of people with dementia finding entertainment in a shared pastime. For this to happen online, we feel members need to be empowered to communicate between themselves, in and around fixed online events created and controlled by organisers. WhatsApp groups, for example, offer this democratic approach.
Schedule of events, notifications and reminders
Bringing people together online successfully requires members to be able to arrange times to meet. Notifications for events allow reminders to appear on device screens, at appropriate times and according to personal preferences, with single tap buttons to join a meeting. An integrated calendar or event schedule within the chosen platform offers the chance to discover and join open meetings, making it easy for users to participate.
Passwords, downloads, codes, usernames, complex feature-rich interfaces all serve to frustrate many people who are not accustomed to technology. Many people lose the ability to stay on top of their emails. Having an app that is easy to set up and sign into each time is of high importance to our demographic. Intuitive, simple, and accessible interfacesare also important.
A dedicated online space
There is also value in on online community having a dedicated presence on a smartphone or tablet. An app icon that leads you solely into the virtual community space and is not mixed with other communications from family, acquaintances, businesses and spammers, offers a simpler, safer environment. This is where solutions that use, say,Facebook Pages may suffer. It’s easy to sign up as many people have a Facebook account, but difficult to cut out the distractions of competing interests (e.g. advertisements) that erode the user-experience and simplicity of the online community.
Safe and Secure
Finally, of course, data privacy and security are especially important for a potentially vulnerable group of users. It is important that only trusted people can be admitted to events and closed groups, and that nuisance users can be excluded. User administration is important to help and protect users. Rules of engagement and etiquette within the group should be established and agreed to by the membership. Information Governance, GDPR and data encryption are important, and must be appropriately implemented. We must also consider usability and accessibility when making an app safe to use.
We are at the stage of trying out some of these technologies with people affected by dementia, and community organisers, and aim to report on successes and limitations. We believe there is a lot of merit in trying technologies that are designed for workplace teams. The design of products like Microsoft Teams, Slack and StarLeaf mean you cancommunicate in a dedicated closed environment, offering all the facilities of voice, text and audio communications, but within a controllable and potentially safer environment. The challenge for us will be in creating a simple and intuitive user-experience within these ‘feature rich’ environments. This type of solution may not be the free one, but as they say, you get what you pay for. And if you are not the customer, then you could be the product!
1) https://cyberpsychology.eu/article/view/4285/3330 — Lauren E. Sherman, Minas Michikyan, and Patricia M. Greenfield, “The Effects of Text, Audio, Video, and In-Person Communication on Bonding Between Friends,” Cyberspsychology: Journal of Psychosocial Research on Cyberspace, vol. 7, 2013.