Emily Kenway's Book: 'Who Cares: The hidden crisis of caregiving and how we solve it'
An essential read for carers and policy makers.
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When I read “Who Cares: The hidden crisis of caregiving and how we solve it” by Emily Kenway in 2023, it immediately became one of my Top Ten Annual Re-Reads:
Since its publication, Emily has been interviewed and written several pieces for The Guardian newspaper about care, carers and social policies.
Many thanks to Emily Kenway for all the work and advocacy she’s doing for unpaid carers, especially in the UK, and caregiving.
In this article you’ll find
Links to The Guardian articles by Emily Kenway that I’ve read.
Videos and interviews with Emily Kenway.
Why “Who Cares: The hidden crisis of caregiving and how we solve it” by Emily Kenway is a must-read for carers
For the very first time, one book has managed to neatly articulate and expose the realities of being a carer. It’s not about ‘how to do caregiving’. This is about the carer.
It is truly disturbing to read all these truths about what I have been through and what I continue to experience, fully stacked, compounding, and resonating so loudly. A thorough evidence-based approach to kin-caring.
I read this book in July 2023. It was a compelling page-turner for me because it forensically referenced and laid bare the reasons behind the state of caring today.
Plus, I wanted to discover potential solutions that could enable us to be seen, valued, and embraced, not marginalised in society.
I encourage you to read it for yourself, whether you’re a Carer or not. A key read for me was ‘Chapter 4 On Family: Wise Women and the Practice of Kinning.’
Each truth is treated with care, especially when explaining the injustice, the history and societal conditioning. Emily weaves in her own experiences of caring for her mother (who was suffering from cancer & receiving treatment).
Statements encompass more than one country, more than one opinion, and many meaningful references. She presents each point logically, substantiated by evidence and historical facts.
The narrative's eloquence guides our education and highlights how people's views differ and why each carer’s experience is unique. It offers irrefutable, heart-sinking, corroborating insights.
As a Carer, will you feel vindicated, enraged or frustrated at the compounding stack of injustices?
For those who are not yet caregivers, the book provides an important bridge towards understanding the struggles and challenges of what could lie ahead, and why you may feel conflicted about embracing the term ‘carer.’
This book enabled me to mould my ideas for this Carer Mentor website and publication. Until I read it, I’d found a complex web of maddening reasons for why things are the way they are. As soon as I researched one thread, numerous others would complicate the picture. I couldn’t get my arms around it all, research it or lay it out to logically see the interwoven picture.
Emily Kenway’s forensic research exposes irrefutable evidence and reveals the historical stepping stones so everyone can walk the whys and hows of how we got here.
While I hope that governments and policymakers act quickly to achieve meaningful, long-term social change, I have greater faith in how one or two people can help and support each other. We can build relationships and a sense of community locally. Intergenerational friendships and neighbourly support, checking on each other, getting shopping, picking up prescriptions…this is how we can act locally to build community.
Carer Mentor: Empathy and Inspiration is for those of us who are caregiving today. It’s a hub of resources and ideas that anyone can access whenever they wish. It’s a portal connecting people and other publication communities, as a community support network. Every care situation is unique, but no one needs to feel alone.
The Amazon review on the UK website:
A ground-breaking book lifting the lid on the hidden side of the ‘care crisis’ - helping us reimagine our world to put caregiving at its heart
Deftly blending memoir with forensic research and the voices of caregivers from as far afield as Norway, Nepal and Nebraska, Who Cares is an essential read for anyone who has ever cared for, or will receive care from, another person - which is to say, for everyone.
Prompt for discussion:
Have you read the book? What was your most thought-provoking takeaway?
The Guardian articles
May 21, 2023 ‘Care bots’: a dream for carers or a dangerous fantasy? Robots that can assist caregivers have been talked up as being transformative. But some researchers fear such technology could take more than it gives. By Emily Kenway
June 30, 2025 Carers like me connect patients and doctors – so why are we so often made to feel invisible? People looking after loved ones struggle to be heard by health professionals. Yet without us, the system would collapse. By Emily Kenway
August 4, 2026 What if older people refuse help outside the family? This is the taboo that could wreck care reform. Many fear losing their independence if they agree to care workers looking after them. Any social care review must take this on board. By Emily Kenway
4 interviews Emily did around the time of the book launch
The Fearless Caregiver April 30 2023
Carers UK June 2023. July 14 2023 (Where I was first introduced to her work)
The hidden crisis of caregiving and how we solve it | Emily Kenway | Humanists UK Convention 2023
In conversation with Head of Humanist Care Clare Elcombe Webber, writer and activist Emily Kenway uses in-depth research and the stories of real carers to explore what care is like today, and outline a vision for a better way forward. In this session she draws from her book 'Who cares: the hidden crisis in caregiving, and how we solve it' – recently selected as a finalist for the Orwell Prize for Political Writing
As America’s population ages, women shoulder the burden as primary caregivers. 31st March 2024 PBS NewsHour (8mins 43)
Currently, 1 in 6 Americans is older than 65, a number that’s projected to rise to 1 in 4 by 2050. As older Americans’ needs for medical care and other support grow, women bear the biggest part of the burden of caring for them. Ali Rogin speaks with some women about their experiences and author Emily Kenway about the often unseen costs of caregiving.
For anyone who doesn’t have the time or can’t listen to the video, here’s the transcript:
EMILY KENWAY, Author, “Who Cares”: Yes. So I cared for my mother. She was a single mom, which meant I needed to step in as her daughter when she was diagnosed with cancer in 2016. And obviously that was incredibly difficult personally. But it also woke me up politically to what’s going on with caregiving around the world today. And we know that this is just going to get worse over time as well, right? So we have aging populations around the world. You know, one demographer has called it the greying of America. And so we can all expect a greater and greater load of caring responsibilities and to be in the crisis that I was in unless we introduce major changes.
ALI ROGIN (AR): And when you talk about who’s taking on those responsibilities, it is disproportionately women. Why have you found that to be so?
EMILY: We have this historical heritage whereby around industrialisation, we created this cultural norm, right, that the man goes to work and does waged work and the woman stays at home and does unpaid care. And we haven’t caught up with today’s reality at all, because, of course, today more women are working. Many households need the women to work. You know, those wages are not things that can just be tossed aside.
And so this idea that we can carry on ascribing to one gender all of the weight of care for our entire species is really outdated.
AR: And given all those realities you just laid out, what are some of the challenges that women tend to face when they become caregivers?
EMILY : Of course, there’s a financial impact.
Most of the time, if you’re a caregiver, you’ll need to reduce your working days and you may give up your work entirely.
In fact, we know in the U.S., on average, women caregivers lose about $320,000 in lost income and lost social security benefits.
And that doesn’t just harm us right now. That means we’re going to have a real problem in retirement, right? Our security in old age is harmed just because we stepped in and did the right thing.
There’s also a massive psychological toll. You may be having to constantly monitor and watch your loved one’s condition.
You’re experiencing what we call role reversal. So you suddenly become the mother of your mother, right? And you’re dealing with that strange dissonance.
And then, of course, you’re moving through a world that doesn’t recognize or support this. So your employer may well not accommodate your caring responsibilities.
And it bears out in the statistics, too. We know that caregivers have higher rates of depression and anxiety for these reasons.
AR: Given the fact that so few resources exist, I would imagine that also comes with a lot of assumptions and misperceptions. What are some of the most pervasive that you’ve come across when it comes to caregiving?
EMILY: I think one of the most pervasive assumptions is that caregiving is kind of something that doesn’t have any costs when it’s performed by the family, right? So, yeah, it’s free. We’re not being paid, but there are enormous costs.
When you’re very elderly or very unwell, you need to be kept warmer. There’s higher energy costs. There’s mobility aids. There’s special diets. There’s all of this kind of thing. So there’s a material, practical reality there.
The other misperception I encounter a lot is this idea that some cultures can manage this more naturally than white Western cultures, right? So that would typically be countries in the Global South. And it is very much more normalized that they would perform care, for example, for their parents-in-law, not just their parents. But when you actually listen to them, they are struggling in exactly the same ways as I was, the same ways as women everywhere are, because care is hard.
So we have to be very careful of making assumptions based on people’s culture, ethnicity, nationality, and so on, and instead see that women around the world, we’re all in the same fight here together.
AR: And Emily, here in the U.S., one in five adults right now are working as caregivers. How can we better prepare to care for these aging populations in the years to come?
EMILY: What we need to do here is really recognize that humans are going to have to provide care. And so we need to embed policies that recognize that. That’s things like paid caregiver’s leave, from work?
So at the moment, the Family and Medical Leave Act only provides unpaid leave. And in fact, the Department of Labor found that 41% of private sector employees aren’t even covered by it.
So there are these fundamental economic policies that we shouldn’t even be having to ask for, frankly, because it’s so obvious that they’re necessary.
But basically, we’ve arranged our work world as if we’re not actually humans who love people who need us to step in. And that’s got to change.
AR: Emily Kenway, author of “Who Cares: The Hidden Crisis of Caregiving and How We Solve it,” thank you so much for joining us.
EMILY: Thank you.
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