In Who Cares: The hidden crisis of caregiving and how we solve it, published in 2023, Emily Kenway shines a light on the experiences of ‘invisible’ caregivers (i.e. people caring for loved ones, unpaid) and explores why something that so many people do is so routinely dismissed and misunderstood.

When Kenway became the primary caregiver for her terminally ill mother, it irrevocably changed her as a person. The experience made her realise that caregiving is both “an inherent part of human life” and “a natural fact of existence.” She emphasises that for those of us who haven’t already found ourselves in a situation like hers, it is waiting in the wings as a likely part of our futures.

Yet despite the prevalence of caregiving in our society, it’s a topic that people typically want to avoid thinking or talking about. For instance, Kenway mentions how people would look uncomfortable or ‘flinch’ when she raised the topic in conversation. Similarly, there is a tendency for people to view caregiving as something that’s exclusively done by other people, saying “I couldn’t do that” and keeping it at a distance.

This has all led, Kenway argues, to caregivers becoming “an overlooked category of people experiencing social stigmatisation and exclusion” – and this failure to value unpaid caregiving also translates into a lack of appreciation for it as a paid job.

Drawing from personal experience, Kenway provides a moving account of how being a caregiver affects every aspect of your life, giving you a new identity where your existence revolves entirely around someone else’s needs. We get insights into the impact it has on a person’s work, finances, social life and relationships, as well as the toll it takes on both physical and mental wellbeing. At one point, Kenway tells us how she stopped taking medication for depression whilst caring for her mum, as she didn’t have time for the GP visits needed to access it. She also highlights that even when professional domiciliary care is in place, this doesn’t alleviate the pressure since you still have to make all of the arrangements, check everything is as it should be and fill the gaps between shifts.

Over the course of the book, Kenway makes a compelling argument that we are living in a new world, and a new model of care is needed for it. For example, one chapter explores how the traditional idea of family is changing, with fewer women having children and families being more geographically dispersed than in the past. Nowadays (and in the future) when somebody is in need of care, they are less likely to have children living locally to provide it.

Another thought-provoking chapter examines the ‘gender logic’ that underpins caregiving, including (among others) the fact that adult daughters are more likely to provide care for parents than adult sons. Another delves into the difficulties of trying to juggle work and care, considering how and why traditional jobs are not built for people who are also caregivers.

The first step to moving forward, Kenway says, is creating a world where people have a better understanding of what it means to be a caregiver, accept it as a natural part of life and do not fear it. She also considers the pros and cons of ‘carebots’ and other technologies, plus the role that community can and should play in the future of care, stating: “My mum’s life – and her death, too – would have been remarkably improved by living in a world that included local, self-governed and loving networks of support in it. So would my life.”

Who Cares doesn’t just shine a light on the gruelling day-to-day experience of unpaid caregivers (something it would benefit all of us to know more about); it also offers a persuasive argument for change, and Kenway’s vision for the future is a compelling one.

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