Supporting Dementia Care: From Prototype to Pilot
The Supporting Dementia Care project seeks to find ways to tackle digital exclusion by taking a co-design approach with people living with dementia. We wanted to find ways to support people to start using digital technology to do something important to them, and particularly to tackle isolation by focussing on using technology to enable online community support.
This project, part of LOTI’s Digital Inclusion Innovation Programme, is led by a team from the Helix Centre, Imperial College London. We worked with boroughs, dementia support organisations and other partners to design a Digital Befriending Kit intended to reduce isolation and boost digital inclusion.
We have written previously about our approach for scoping and refining using co-design workshops, and in this final post we describe how we tested our prototypes with two pilot virtual community groups, and lay out some of the insights and findings.
“We believe that a 81% successful engagement (consistent attendance by 9 out of 11 participants) reinforced by a strong desire among the cohort to continue the activities beyond the pilot project is a positive result.”
What is the Digital Befriending Kit?
The kit we created through an iterative process aims to make the process of joining a Zoom call as accessible and easy as possible, by configuring and augmenting a standard tablet computer.
The core innovation was to replace the email links, passcodes and meeting numbers used for most Zoom meetings with a simplified printed invitation. The printed invitation could be given out by hand, or posted. It contains a QR code (type of barcode) that can be scanned with an app on the tablet, to take you right into the Zoom meeting.
We created an online web-app specifically for making these printed invitations. Anyone with a Zoom account can add details of the meeting, and copy and paste a Zoom link into it, and download and print invitations on plain A4 paper. This tool is intended for community organisers and meeting hosts, though family members and carers may also find it useful.
Through trial and error, we ended up making our own QR code scanning app, so that we could keep it really simple, and add context-relevant prompts.
We also created a simple card stand for the tablet, to help with the scanning of invites, by positioning them appropriately. The stand was also useful in the meetings to support the tablet, and was intended to deter people from hiding their tablets away in the cupboard and forgetting about them. The stand proved to be a popular addition and was used by participants throughout our pilot study.
Finally, we took a tablet computer (e.g an Apple iPad, or Samsung Tab) and simplified it by removing unneeded apps, configuring basic settings, and adding simple wallpapers and home screens that help the user locate the buttons and controls.
Why concentrate on Zoom meetings?
Our hypothesis was that to get people engaged with technology we needed to make it useful for addressing the isolation that many people living with dementia, including carers feel. This came off the back of the pandemic, where people living with dementia were particularly isolated as they were less able to adapt to online ways of working and socialising.
As such we also wanted to test different approaches to online social activity, and set out to experiment with a variety of different formats. We worked with community groups in Hammersmith & Fulham, Westminster, Lewisham and Newham to test the prototype kit and design appropriate activities to trial in a pilot.
How did we test it?
To test the prototype kit and approaches to online community activities, we recruited participants through collaborating community organisations in 4 broughs. We split them into two smaller groups (one of 5 and one of 6) and arranged 4 weekly sessions for each group over a month. We provided the complete Digital Befriending Kit (including iPad and 4G router where needed).
We created 4 different sessions, each one building on feedback from previous sessions, to better understand what would work for the group. We started with a poetry reading session, then a live music session hosted by a skilled musician. We followed this with a Bingo session, and finally a drawing session. The activities were repeated across the two groups, and we held weekly individual feedback calls with the participants, as well as an individual evaluation discussion at the end.
What did we find out?
With 11 participants over a short period of time, our attempts to measure changes in self-reported feelings of isolation and social connection were inconclusive. This was in part due to short term memory challenges, and the complexity of the questions. However, there were many insights and comments that gave us a strong sense that the participants had benefited significantly from the interventions, both the kit, and the activity.
Participants who did join were increasingly enthusiastic about the group sessions, and were sad to see them end, as were we.
“We are secretly hoping they bring you back to run [sessions] again – it was so much fun and social for ‘N’??”
Carer of a person with dementia
The printed invites, and stands were used successfully throughout the trial, though normally with assistance from carers. We do think the kit significantly helped people with dementia to engage with the process, and has a lot of value for digitally excluded carers, and people with mild dementia to engage.
From the testing and feedback we know we could do more to improve the stand and the app in particular.
2 participants out of 11 recruited and consented, were either not willing or not able to join the groups. Those that started, remained involved with increasing enthusiasm, despite some initial hesitation and scepticism from some at the beginning.
The activities were well received, but we learned that the greatest value in the groups came from creating space for people to have natural conversation between themselves. A game of bingo, or a shared song is a great ice breaker, or fall back activity, but what people seemed to enjoy the most was exchanging stories, experiences and local knowledge in the group.
“Thank you for your support in setting ‘D’ on the road to using IT again.”
Partner of someone living with dementia who had been trying to get them to engage in social activities for some time.
How can you find out more, or build on this work?
We have reported the processes, know-how and insights from this project in a toolkit, which will be published online by LOTI in the coming weeks.
If there is one single insight we would like to share from this project, it is the value of co-designing digital experiences with the people who are going to use them, in order to create something simple and accessible that can start (or re-start) them on their digital journey. Start with the need rather than the technology, and design the experience from there. If we can bring someone satisfaction from using a digital device to answer their first need, then their enthusiasm and curiosity may encourage them to learn other skills with the technology. For example, we had participants start to use the iPad for mind and memory games, once they became familiar with it through the Zoom sessions.
Furthermore, we have made our tools available for others to use. Particularly the printed invites via the web-app, and the purpose made ‘Tap & Chat’ invite scanning app. You can access these tools via this website.
Finally, we will be doing a ‘Show and Tell’ online to discuss the project on 6th July at 11am. Register on Eventbrite to participate.