#1 Understanding Isolation.
16th May, 2020
Matt Harrison, Alice Blencowe, Lauren Dowling, Natasha Howard, Alinda Fernandes, Dr Shirley Evans
Under the current circumstances of COVID-19 related lockdown, we are seeing how people living with dementia are particularly vulnerable to the challenges of social distancing and isolation. They are commonly frail with complex health needs, vulnerable to infection, and reliant on regular social contact for support.
As part of the UK DRI Care Research & Technology Centre at Imperial College London, we are working to support this demographic through the crisis. So alongside other initiatives, we have begun collaborating with Alzheimer’s Society’s innovation team to use our design and innovation skills to address issues of isolation arising from the COVID lockdown.
In this series of articles, we will document our process, findings, and mistakes. In doing so, we hope that other organisations of all sizes working in this field can benefit from our approach to tackling isolation, both during this crisis and beyond.
This project is a collaboration between the UK DRI Care Research & Technology Centre, at Imperial College London, Alzheimer’s Society, with support from Dr Shirley Evans from the Association for Dementia Studies, University of Worcester. We have provided more information on these groups at the bottom of the article.
Our vision is to create virtual community centres. Through a process of co-design and iteration with existing networks,we want to recreate the core functions of dementia support groups online, embrace the opportunities of digital technologies, and bridge the gap between digitally connected and unconnected members.
Some encouraging early insights have already emerged that offer encouragement. Firstly, out of this crisis, we are going to see a new group of isolated (and generally older) people who are skilled, equipped and eager to use technologies to keep in contact with friends, peers and family. Secondly, although we are mindful that relying on technology and access to the internet does risk excluding people, it also presents an opportunity. We can now include people who have been hitherto excluded — by physical disability or geographical location — from participating in ‘real-world’ social groups and events. We hope that building communities supported by simple, and well-facilitated technologies can lead to meaningful (re)connection.
The promise of technology to offer ways to enhance, and open up, opportunities to address isolation has long-term potential. As well as social benefits, it will also extend into opportunities for research engagement and medical consultations that rely less on congregating frail and unwell people in waiting rooms.
The consequences of social distancing
The first step of answering any brief is to explore and define the problem. Alzheimer’s Society has an online Innovation Hub which brings together people with an experience of dementia, health and social care professionals, innovators and more. Through the Hub, members share, vote and comment on ideas within current challenges being faced. The Innovation team posted a challenge on the hub around COVID-19, with the intention of seeking opportunities to work with others towards a shared goal of supporting people affected by dementia through the pandemic.
The call sparked a variety of issues and ideas, which formed a rich starting point to understanding how social isolation is affecting people in the community. Analysing these contributions, alongside some direct user research with the UK DRI study cohort, gave us a strong insight into the problems caused by the COVID-19 lockdown, which we summarise here:
Loss of social contact with friends, neighbours and family
The first and most obvious consequence of enforced isolation is one that we are all affected by; the loss of contact with the people we see on a regular basis. People in the workforce are quick to adapt remote working tools for remote socialising, but many are not equipped with the technology and knowhow for online meetings. People affected by dementia who rely heavily on regular groups (e.g. church or dementia cafes) have lost vital human interactions.
Increased pressure for home carers
Care for someone with dementia is often provided by the person’s partner, who may have frailty and health challenges of their own. Carers rely on regular support, and respite from friends, family, neighbours, paid carers, and support groups. This support has evaporated through social distancing, leaving vulnerable carers with increased pressure and little emotional or practical support.
Losing skills and forgetting familiar faces
We have heard concerns of people with dementia forgetting important skills during the lockdown that are critical to their independence. For example, knowing how to catch a bus, or find their way to the shop or library. People with dementia may also lose recognition of immediate family and close friends during this period, marking an irreversible step change in their status and a devastating loss to themselves and their family.
Change to routines
For many people with dementia, routine plays an important part in their day and in their psychological comfort. Socialising, contact with friends, exercise, and leisure activities are habits developed over a lifetime, linking us to our past and providing reassurance. Changes in routine can cause frustration, irritation and upset for people with dementia, and anxiety and strain for carers establishing new routines in line with lockdown guidance.
Not understanding reasons and limits of rules for staying at home
People with dementia can find it difficult to understand and retain the reasons for changes to routine. The frustration and anxiety this can cause is described by one contributor to Alzheimer’s Society Innovation Hub COVID-19 challenge:
“Just put the phone down to a carer who is struggling to cope with her husband during the COVID 19 period. Her husband who has dementia is agitated because he hasn’t seen anybody… …He has his coat on waiting at the front door and is not interested in the back door or the garden. She has tried distraction techniques, but he is adamant he wants to go. She has also tried to explain about social distancing and self-isolation etc which is making him a little more anxious.”
Confinement to rooms in care homes
As we write this, the headlines are describing how care homes are ‘becoming the new frontier’, facing a massive challenge, in the fight against coronavirus. It is clear that care homes are going to remain in lockdown long after other environments open up. Family can no longer visit their relatives and partners, sometimes separating couples who have maintained daily contact for decades. Some of our most vulnerable members of society are being confined to their rooms within care homes in a bid to control infections in the closed environments of dementia units. This will likely cause considerable confusion and distress. The pain for family members who are powerless to do anything, or visit is distressing.
We can’t help to fix all these issues with a simple technology intervention. But we do think the promise of affordable, pervasive devices and apps can play a part in helping people reconnect online, and mitigate some of the emotional, cognitive and even physical issues around isolation for people with dementia and their families.
One of the main challenges to overcome is making sure the tools selected are fit for purpose, matching the needs and technical abilities of our user base. Technology alone is not the solution, but rather a means to an end; to connect people that need connection the most. We understand that many of these hard to reach people will not have access to technology. We hope that with the right resources and facilitation, more technologically-able people in these communities will provide a bridge to those less able — creating a connected network of dementia community centres.
Over the coming articles we will document our exploration, prototyping and testing of solutions, through a process of collaboration and co-design with the people we are designing for. All done remotely, of course!
About the collaborators in this project.
The primary research goal of the UK Dementia Research Institute Care Research & Technology Centre at Imperial College London is to create and use sensors to remotely monitor people with dementia and their carers in their homes. The goal is to improve our understanding of living with dementia and help individuals manage better and for longer in their own homes. By creating a ‘smart-home’ set up, we connect people with dementia and carers to a remote team who can monitor the sensor data and provide clinical advice over the phone. Meanwhile we have scientists, engineers and clinicians developing technologies and algorithms to make sense of the data. Working directly with people affected by dementia, user experience designers from the Helix Centre at Imperial collaborate with researchers across the UK DRI Centre to make the experience of the ‘smart home’ and monitoring platform user-friendly and desirable to its end users.
Alzheimer’s Society is the UK’s leading dementia charity. They campaign for change, fund research and innovations to find a cure, and they support people living with dementia today through information and services. There are currently around 850,000 people with dementia in the UK and this is projected to rise to 1.6 million by 2040. Alzheimer’s Society’s Innovation team, aims to understand and tackle real-world challenges to rapidly identify and develop and test new solutions to help improve the lives of people affected by dementia.
Dr Shirley Evans is from the Association for Dementia Studies at the University of Worcester. Shirley is Programme Manager for the UK Meeting Centre Support Programme which aims to establish new Meeting Centres for people affected by dementia and support existing ones across the UK. Rooted in the physical meetings of both members and family carers, Meeting Centres are grappling with the move to online meetings, experimenting with technologies and ways to keep in contact with those without access to technology.