Ingrid’s 22-year-old son Tom doesn’t understand danger. He cannot leave the house by himself because he does not know that cars may kill him and, in winter, he forgets to wear enough clothes to stay warm. He was born with Down’s syndrome and Ingrid says that “he’s calm and shy and really polite, but he needs help with everything”.
Ingrid is one of millions of people caring for a loved one at home today. In the UK, “family caregivers” constitute about 9% of the population and they outstrip paid care workers by more than three to one. This is because most care continues to be carried out in people’s homes, rather than in residential facilities or by paid workers in the community. For this oft-overlooked army of supporters, it’s a difficult life. According to an annual survey of family caregivers in the UK, 45% had been providing support for 90 hours or more each week, and a similar proportion had not taken a break from caring in the past year. Caregivers consistently report lost income, higher than average rates of depression and anxiety, lack of time to rest, exercise or socialise, or to attend their own medical appointments – to do much of anything for themselves, really.
Many are of working age and juggle their caring responsibilities around paid employment. Ingrid is a teacher and a musician by day and then, from 4pm until the next morning, she is Tom’s caregiver, and on weekends too. Tom has a propensity to wander at night and because he is not aware of danger, this used to mean Ingrid barely slept. She was doing a “double shift” – working at school in the daytime and conducting a waking watch at home. But nights have been eased recently by the installation of an alarm on Tom’s bedroom door that goes off if he leaves.
Technology has enhanced their lives in other ways too. Because Tom cannot speak, he uses a “talking board” on which he presses buttons to communicate what he wants – often, it is Coca-Cola or orange juice. These two technologies – the alarm and the talking board – are rudimentary, but the new generation of care tech may markedly alter their lives in years to come. In Japan, a team is developing a “conversation partner” that can use images or words to broaden the choices available to people like Tom – perhaps he wanted apple juice all along?
While Tom cannot talk, “he can understand”, Ingrid says, and she spends a lot of time reminding him to do daily tasks such as getting dressed or keeping clean. This presents another avenue for care tech to change their lives for the better. The ElliQ is an AI-driven social robot that looks a little like a bedside lamp and actively communicates with its users (rather than waiting for voice commands, as Amazon’s Alexa does). It could learn Tom’s daily needs and provide timely and encouraging reminders. This could be invaluable for Ingrid, removing her feeling that she’s “had a small child for 22 years who needs constant attention”.
It is this sort of potential that makes Madeleine Starr, director of business development and innovation at the charity Carers UK, exuberant about the “revolutionary” potential of technology. “Technology can take the pressure off,” she says, as it does with Ingrid’s improved nights. “It gives carers peace of mind, and that’s everything.”
Even more revolutionary would be “care bots” such as Pepper, a semi-humanoid bot that engages in conversation and leads exercises or games. It’s one of several such bots that the Japanese government has introduced to residential care facilities. Robear, another Japanese creation, looks exactly like you might expect a robot bear to look – big round eyes and a stocky body. It is apparently capable of lifting people from beds to wheelchairs. This could be hugely helpful to caregivers, more than half of whom report having their own long-term health condition or disability and so find the physical tasks of care difficult.
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But according to James Wright of the Alan Turing Institute, this is little more than fantasy. He spent a year and a half researching the reality of care bots in Japan and warns that “their real-life abilities trail far behind the expectations shaped by their hyped-up image”. He found that care bots were used initially and then “locked away in a cupboard”. Tellingly, the company behind Pepper ceased producing it in 2021, citing weak demand. Wright also found that care bots often created more work for caregivers, who needed to maintain, monitor and operate them. Dr Kate Hamblin leads on digital research for the UK’s Centre for Care, and she echoes the concern that care tech may not be the labour-saving dream it seems. “Context is so important,” she says. “Technologies can support carers… but can also add a layer of complexity and frustration if they’re poorly delivered and designed.” While Wright’s work disabuses us of the idea that a dawn of humanoid care bots is on its way, Hamblin’s focuses on technologies that are already here. This includes simpler tech such as Ingrid’s night alarm and similar devices such as fall sensors, and more cutting-edge machinery like ElliQ, which came to market in spring 2022. And as we have seen from the difficulties faced by caregivers, these very real forms of care tech seem to be sorely needed.
In discussions of care and technology, the focus is usually on care receivers and the ethics of outsourcing their care to machines. When caregivers are considered, it’s usually regarding the liberating potential of technology that Starr describes. But are we missing something about the potential impact of these technologies on caregiving? Because for all Ingrid’s frustrations, she also thinks that caring for Tom has improved her work as a teacher: “I have a good connection with my pupils. I can see when they’re not happy and when they need me to stop in the hallway and just say, come on, let’s talk … I’ve learned how to read people.” She ascribes this to the years of acute attention she has paid to Tom’s facial expressions and body language.
The benefits of caregiving, like Ingrid’s honed awareness, are being recognised increasingly by social scientists. For decades now, caregivers have been assessed in clinical settings using a tool called the Zarit burden interview, originally developed in 1980 and against which caregivers rate themselves on a score of 0 to 4 with questions such as: “Do you feel your health has suffered because of your involvement with your relative?” “Do you feel angry when you are around your relative?” Now, German researchers are developing a counterpart – the “benefits of being a caregiver scale” – to measure the positive aspects of caregiving such as those described by Ingrid. The scale assesses issues such as time management, patience and feelings of confidence and purpose.
“Carers I have spoken to in my research often see the positive sides,” says Hamblin, “and they wouldn’t want to entirely withdraw from caring.” The scale could help to explain Hamblin’s observation, showing us a different side to caregiving than stories of burden and burnout – that is, the stories that underpin part of the rationale for care tech. In fact, there is already a substantial body of evidence that caregivers routinely report benefits alongside their difficulties. One study, which focused on family caregivers for young people with muscular dystrophy, found that 88% had gained something positive from the situation, including a sense of personal growth, resilience, altruism and increased sensitivity to other people. Another found that parents like Ingrid, who care for adult children with impairments, scored highly on deriving satisfaction from their caring duties. Compellingly, they also felt they had a stronger grasp of what matters in life.
Patience, confidence, purpose – it seems that caregiving generates faculties many of us consider desirable. Perhaps caregivers know something under-recognised in discussions of care and tech: that care, like love, is multidimensional – the good and the difficult coexist.
Prof Shannon Vallor is concerned that the brave new world of care tech has overlooked this dimension of caregiving in its laser-like focus on alleviating hardships. Her work as a philosopher of technology, currently at the Edinburgh Futures Institute, is drawing our attention to the ways in which jettisoning care to the machines might mean we lose important capabilities. For Vallor, the assumption “that caregiving is generally not only a burden upon caregivers … but that it is nothing except a burden” is not only a falsehood, but also a moral risk. What if removal of the caregiving role is also the removal of an important, and importantly human, educational experience – one in which we learn “to practise and cultivate empathy”, among other capabilities, and to develop what she calls “an ethical self”?
There is a risk in talking about care as a moral good, of which Vallor is aware. Today the millions of unpaid caregivers in the UK are suffering. Will sharpening our focus on the benefits of caregiving undermine the changes that they say they need? Starr thinks not. “The answer is this: we can only experience the benefits of care if we have the support we need, otherwise it overwhelms us.” Ingrid’s story bears this out. She brightens when she talks about her work as a teacher, describing it as a source of great satisfaction. It’s a crucial arena in which she can see what she’s gained from being a caregiver, such as her ability to read her pupils’ moods. But Ingrid can only work because Tom has a place at a free day-care centre. “Benefit-finding”, as the social scientists call it, is exactly what it sounds like: an active process, reliant on someone being able to seek the good. And seeking requires energy, and forums in which the good can become apparent. We cannot cultivate the “ethical self” envisaged by Vallor if our practical and material circumstances grind us down too far. As she puts it: “Caregiving in inadequate circumstances is likely to drain us of emotional power and starve empathic responses rather than cultivate them.”
There is a paradox at the heart of care tech. If Vallor is right, then caregiving is a crucial route through which we can help realise our humanity. The “benefits of being a caregiver scale”, and the growing body of evidence underpinning its development, suggest she might be. In this case, the technologies being developed on behalf of caregivers to free them from their “burden” may have an unexpected cost: the loss of important human capabilities. But experts are clear that technology can be vital for reducing caregivers’ load, too. Paradoxically, then, while tech may prevent us reaping the rewards of caregiving, it may also enable them.
Ingrid still finds herself listening out for the alarm, half asleep, through the course of the night. But she is less exhausted than she was. Tom is on a list for a place in sheltered accommodation but the prospect of him moving out scares her, because although caring for him is hard, it is also very important for Ingrid’s fulfilment. Perhaps the same is true for all of us.
Emily Kenway is the author of Who Cares: The Hidden Cost of Caregiving and How to Solve It (Wildfire £22). To support the Guardian and Observer, order your copy at guardianbookshop.com. Delivery charges may apply
