The role of culture and belonging in online community support
26th April, 2021
In April, Community Makers heard how an established dementia support group, based in the Chinese community in Liverpool, adapted to the pandemic. Although Chinese Wellbeing are primarily focussed on the Chinese community, they also work with other ethnic and immigrant groups, and it was fascinating and revealing to understand the importance of cultural sensitivity and belonging in the delivery of community dementia care. In this post we describe examples relating to the Chinese community, but these hold equal relevance for other communities too.
Di, Nannan and Rita from Chinese Wellbeing also described inspiring techniques for supporting a group that were hesitant around technology to get online and engage through the pandemic.
Di Burbridge started by introducing Chinese Wellbeing, explaining that they were established in 1989 in Liverpool’s Chinatown (the oldest Chinatown in Europe) and that they now employ 33 staff and 5 volunteers, and are rated ‘outstanding’ as a domiciliary care provider.
As well as providing care services, a large part of their work includes raising awareness and reducing the stigma of mental health issues and disabilities within this community. Within the Chinese community there is a widespread fear of moving into care homes, and a feeling that once they go in, ‘their life is ended’.
The older Chinese generation in Liverpool have largely worked in Chinese speaking environments such as restaurants, and despite having lived in the country for many years, have never had the opportunity to learn English. It is a fair assumption that with the onset of dementia, ‘second language’ skills may be lost more quickly and drastically then the person’s first language.
Di also explained how language is a barrier to accessing mainstream services, getting appointments, or describing and discussing symptoms. Memory assessments are also very difficult for people who are not fluent in English.
This illustrates why many dementia support groups may struggle to include people from more diverse backgrounds, and this is surely exacerbated when engagement is through technology, putting a greater emphasis on language in the interactions.
Eating and drinking has always been an important part of their community support, and Di described how they adapted the dementia cafe idea to create Tea House Reminiscence sessions. These use memorabilia gathered on staff member’s trips to visit relatives in Hong Kong and mainland China. When long term memory is the best route to engagement, the need to find culturally relevant stimuli is very important. Of course China includes a huge breadth of cultures and languages, and so it has taken time and experimentation to assemble a library of over 400 items to cater for the needs of the Chinese Wellbeing community alone.
Using games to teach technology.
Nannan showed us an inspiring example of how they had used popular games to teach people how to use video conferencing apps. WeChat is an alternative to WhatsApp used throughout the Chinese world. She showed us a slide with two smartphone “WeChat” screenshots as a ‘spot the difference’ game. As a viewer you are drawn at first to the photograph in the middle of the image that appears to be the same in both parts, but then some people realise that the difference was that in one image the phone was muted, and the other it wasn’t. When people find the difference, they are more easily able to remember how and where to use the mute function on their phone, and participate effectively in group calls. Using games to teach tech skills makes the whole process fun, less daunting and more effective.
Other practical tips shared by Nannan include a suggestion of sending reminders about events and meetings around 10 minutes before the meeting is due to start. Text / WhatsApp / WeChat messages are much more likely to be read than emails, and 10 minutes gives people enough time to organise and get ready. She recommends not sending reminders earlier than this as many people with dementia may try to enter the meeting straight after receiving the message. For that reason, it is also perhaps a good idea to open the online session 10 minutes early so that you can welcome people and reassure participants that they are in the right place.
Finally Nannan described the importance and value of doing background research on participants so that when you do try to engage them online, you have a better chance of success. Knowing about an individual’s favourite foods, music, and important people in their lives, can all help build a meaningful connection and give participants the desire to persevere with technology until they master it and become avid users of online sessions. Nannan describes one participant who overcame a deep fear and distrust of technology to become an enthusiast and advocate for the online sessions. Before COVID she had been an active contributor to art sessions, and eventually she was persuaded to try online art sessions. Now she submits artworks digitally every week, and is early to every session. One of her digital artworks has become the centerpiece of a new mural in the city.
We also saw how the group used videos and photographs taken at prior years’ Christmas and Easter celebrations to recreate online celebrations, sharing happy memories and creative wonders (paper dragons) to keep people connected and engaged through the COVID restrictions.
In discussion after the presentation we considered the question of, given the potential of remote digital connection, whether the community could change its strong local focus and reach people with similar backgrounds or interests over a wider geography? The response was that local proximity still mattered a great deal. People need a lot of support to get online, and a personal connection and trust to make the leap, overcome fear and engage with technology. Technology is also only part of the picture, and to provide a holistic and personal approach, it is necessary to be able to go beyond the digital connection.
For example, they run a tablet computer loan scheme, which is successful, but you have to provide personalised support to help people use it. In many cases this might include a home or garden visit to get them set up (within COVID guidance). Some users will delete the relevant app by mistake, or forget to charge the device. One service user had bad arthritis and could not operate the tablet until they were given a ball pen device to use on the touchscreen.
Di explained that the word dementia is not easily translated into many languages. There is no equivalent vocabulary that contextualises the needs of someone with dementia without stigma and entrenched cultural prejudices. This presentation was very effective in demonstrating the value of culturally sensitive community dementia support to reach more people, and highlighted both the similarities and nuances in providing such dementia support through digital means during a pandemic. We were all touched by the sense of community and warmth of the organisation evident in the presentation.