Who Cares: The Hidden Crisis of Caregiving, and How We Solve It

by Emily Kenway

An intimate and deeply researched account of the experiences of unpaid caregivers, this “beautiful book” (Rob Delaney) calls for us all to put care at the center of our lives When Emily Kenway became the primary caregiver for her terminally ill mother, her life was changed forever. Although she was lonely, she was far from millions of caregivers all around the world are silently suffering from poverty, isolation, and burnout. Saving their nations’ economies billions by providing nonprofessional care, these people—primarily women—remain largely ignored by politicians, in part because the demands of care itself keep them from effectively advocating for their needs. In Who Cares , Kenway brings the caregiving crisis into the light. Blending expert research with insights from her own experience, Kenway shows us that building a world that cares for its caregivers requires us to fundamentally reimagine the role of care in our society, bringing it from the margins to the center of our collective life.  Powerful and deeply reported, 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.  

Genres: Nonfiction, Feminism, Medical, Medicine, Disability, Sociology, Society

304 pages, Hardcover

First published May 9, 2023

About the author

Emily Kenway is a writer, researcher and activist from the UK. Her first book, The Truth about Modern Slavery, delved into the world of human trafficking and exploitation - but not in the way you expect. Instead of taking us on a tour of miserable lives, Kenway showed how 'modern slavery' was a new framing of exploitation, one that served the interests of the economy and the powerful more than those it purports to save.

Her new book, 'Who Cares: The Hidden Crisis of Caregiving and How We Solve It' (April/May 2023) takes us into the invisible world of family caregivers. Weaving together her personal story caring for her mother with in-depth research and interviews with caregivers from around the world, Kenway shows us what care is like today and what needs to change.

Reviews

[Ashley · Rating 5 out of 5]

Ooooooooof. This was a tough read because of how raw it is and how much it makes you think. Kenway writes about the hidden world of caregiving, the misconceptions, the lack of acknowledgement (fiscally, verbally, etc), and what is being done to try to mitigate this difficult area as our population continues to age while fertility levels are dropping. Our author finally was starting to feel stable in the world when her single mother falls ill and she is faced with a decision: care for her mom or continue on her own journey. She chooses to move home to spend time with her mom (with a job that was flexible enough to let her work remotely) and begins to job of a full time caregiver while also working full-time at her job. As we probably all know, working two jobs is difficult, especially if both are full time and things will eventually slip. Caregiving is an especially unique job because caring for family goes beyond what a “job” is in the traditional sense. There is no “off” time and you are inherently emotionally invested because this is family. Honestly, I felt super stressed out thinking about my future and my family and how I will one day have to try to juggle life and caregiving duties because family is family and I want to be there for mine. But it does make you think and I don’t know how I will make a change in this world but I feel like acknowledging this is a problem in our society while still being lucky enough to not be personally affected by it is a good first step.

[Shelby (catching up on 2025 reviews) · Rating 5 out of 5]

Review to come!

[Julia · Rating 5 out of 5]

Being the first to do so, Emily Kenway takes the reader on an expedition, with many stops along the way, into the hidden world of caregiving. Stops include everything from how caregiving affects women, technology, and family to more abstract concepts such as the government, mind, freedom, and work.

She first establishes her credibility through her first hand hardship of being a caregiver to her ailing mother (who was diagnosed with cancer). From bathing her mother to feeding her, dressing her, and taking care of her household duties, Kenway explains the physical, mental, and psychological stress and exhaustion she was silently struggling through on her own. The burden she was carrying spilled into her work and personal life. But she felt that couldn't complain. Afterall, society does teach young girls to be caregivers.

But Kenway challenges this social injustice and disproportionate damage on women's mental and physical health that societal expectations has put on women. She challenges these preconceptions by going on the macro-level, offering solutions from unorthodox care models and communities found throughout the world, to technological advancements that can better the lives of geriatric and palliative care patients. Kneway also wears sociological lens, looking at the demographic transition pyramid for multiple countries, and how this may impact healthcare and the nation's economy--stressing how businesses need to be cognizant of how healthcare impacts their profit margin. Kenway also wears a psychological lens, at time, looking at the possible explanation for why caregivers, especially kin caregivers, are stigmatized and not given the monetary compensation they justly deserve. Humans definitely need to be put much more care into the prevalent pandemic of caregiving.

Towards the end, she also creatively inserts a few poems about the caregiver experience that felt very unique for a non-fiction/ research heavy book.

Overall, this book was a solid spectacular surprise in the topic, the writing style, synthesis of viewpoints and research, and clarity in possible solutions to remedy this hidden crisis of caregiving.

[Clay · Rating 2 out of 5]

Illuminating, I agreed with some points and disagreed with others.

Repetitive. Beyond repetitive.

Also, this book is the definition of letting perfect be the enemy of good even to the point of complaining that a program called Invisible Hands Deliver to help deliver necessities to immunocompromised people during the pandemic was criticized because it didn’t fit the authors extremely narrow view of how care should be provided.

Nothing is ever good enough for Kenway and the “system” (economic, family, and government) needs to be entirely reimagined to solve the caregiving crisis.

[Scott Hartles · Rating 5 out of 5]

This is one of my must reads for 2023 for any non fiction reader.

[Alison · Rating 5 out of 5]

As a caregiver, Who Cares articulated so well many things I’ve had a hard time explaining about why care feels so heavy and isolating and why so many “solutions” don’t feel like solutions in my reality. Kenway even offers a glimmer of hope of how we could do care differently. I want to hand this book to everyone I know.

[Tonya Matheson · Rating 5 out of 5]

This is such a great book. At 31, this author suddenly became her mother's full-time caregiver. It was brutal. She couldn't keep her job or her relationship because of the sheer exhaustion of caring for someone with cancer. The author shows how our goal of being fiercely independent isn't reality. One day, we will either die early or need a caregiver. That is simply the cycle of life, especially with the medical community extending lives beyond what our grandparents experienced. Often these extensions are quantity over quality. The bulk of the work usually falls on one family member who is expected to forego an income and often put their own health at risk. As a society something has to change. One day, your life will be suddenly halted, as mine was when my husband was diagnosed with brain cancer at 51. Please read this book so that you will understand!

[Kate Sparrow]

This book was recommended to me by a young carer and I'm glad I read it. Kenway frames the book around the central premise that we will all be carers: if you are a person who loves other people, then you will at some point find yourself having to care for them in one way or another. From there she tackles the different aspect of care, the problems it poses in our modern society and how we might make things better for carers (i.e. everyone).

What I really enjoyed about this book is it made me think not just about care and my role as a caregiver, but about community. How we choose to live and interact as a society and the way we structure our relationships will be central to how we care for one another.

[Heidi · Rating 5 out of 5]

This is an incredible book filled with the rawness of care giving for a loved one. My mom died one year ago of dementia and I took on the role of her care oversight, financial and emotional help. We need to do so much better as a collective society to support both the family carer. The cost to their emotional, physical and financial health needs to be supported. As a society we tend to shrink away from the uncomfortable. Mortality is a fact of life. We are called to help and do better. It should be supported and normalized. If we worked together to do so then it would not feel as isolating. Life in all stages should be given compassion, dignity and respect.

[Liz · Rating 5 out of 5]

This book wasn’t what I was expecting; I think I was expecting more stories from caregivers when what I got was lots of analysis of what care is provided, by whom, the problems encountered, and some proposed solutions. In hindsight, I’m not sure I was the target audience for it, though who it was intended for, I’m not sure. Perhaps policymakers? Employers?

It was interesting to read, if a little heavy going in places. I particularly liked the story of the men out on a walking holiday whose wives couldn’t come because they were looking after their in laws I.E. the men’s parents. The assumption is that it’s women’s work to give care to the elderly (and to children) in many cases.

[kyluh · Rating 5 out of 5]

everyone needs to read this fr

[Louise · Rating 5 out of 5]

Emily Kenway explores the world of caregivers for adult and long term disabled patients. .She reports on its current state and makes recommendations for the future. The book is enriched by Kenway’s own experience as a caregiver, her extensive reading and research and the visits she made to caregiving individuals and institutions in multiple countries.

The answer to the question posed by the title (Who Cares) is: women, typically family members pressed into service by custom or default. Care for the disabled and the elderly is 24/7 and the women who do this forgo not just earnings, but pensions, paid health care for themselves and their social and family lives. There is a chapter on "Freedom" of which they have very little.

Child care has an infrastructure supporting caregivers, but little is available for those caring for adults and the disabled with long term needs.

The estimate is that 1 in 5 people are currently engaged in some form of this care. Kenway gives many examples of how exhausting this work is and how nearly impossible it is to do while holding a job. With an aging population, low birth rates and high level careers for women, care will be in crisis if no changes are made.

Looking to the future Kenway sees emerging technology and the need for a stronger government role.

In Japan and Germany engineers are building “carebots”. They can speak with the clarity of Siri and provide some level of companionship. Currently they can lift patients, take vital signs, and remind patients about pills. They will undoubtedly be programmed for more. Robotic puppies have been well received as companions by the elderly.

Kenway visits “care centers” and speaks with those who advocate for them. These can be as simple as expanded senior day care where everything from diapers to colostomy bags are changed. They can be communal living setups designed for shared care. Payment for the caregivers (and more caregiver friendly leave policies for those who somehow manage to be employed), be they family, volunteers or skilled staff, is needed.

I particularly liked that the examples, interviews, policies and statistics were international. It helped to see the big picture.

If you are interested in this topic, I highly recommend this book.

[VC Inspire · Rating 5 out of 5]

Congratulations and Bravo to Emily Kenway.
I feel angry and frustrated the more I read this book. The more I read the more I’m physically chilled, shuddering literally. NOT because the book is bad, poorly written, or wrong. Quite the opposite. For the very first time, 1 book has managed to neatly articulate truths, exposing the realities of being a carer that I have experienced 1st hand, that I could not articulate, and that I have only managed to partially research and understand. It is truly disturbing to read all these truths about what I continue to experience, stacked up and resonating so loudly. A thorough evidence-based approach to kin-caring. Thank you Emily Kenway!

Each truth is treated with care in terms of explaining the situation, with n=more than just 1 person, more than 1 country, more than 1 opinion, and numerous studies. She presents each point in a logical sequence substantiated by references and historical facts. The eloquence of the narrative allows us to be aware and reflect on how people's views differ and why. Irrefutable.

[Cherie Cawdron · Rating 5 out of 5]

Great read about family caregiving, how society values our carers and what community and government need to change to make it easier for the growing number of people who will become carers in their lifetime. The author comes from the lived experience of caring for her Mum, when she is only in her early 30's, and uses her story and others to show how policy, regulation, patriarchy and community need to think differently if we are to improve the lives of the many people who have family members to care for. There were good examples across the UK, USA and Scandinavian countries which gave a global (first world) view of care, and what impacts of policy have meant in those places. As a full time carer for the last 20 years, a woman, and a person interested in how to change the 'free family care' and caregiver burnout problems, this book was well referenced and had great insight into thinking about how community needs to think differently around policy if we are going to sustain the growing disabled and aging population.

[Renée Millette · Rating 5 out of 5]

The best book about caregiving that I have come across so far. Kenway offers a different perspective than the usual ones in books about taking care of sick and dying parents, and one that is very similar to my own. Being young while her mom had cancer was definitely a huge factor to this. Unlike other books, Kenway offers solutions far greater than hiring care and making sure your parents have their assets under control. In fact, she barely talks about money and services at all. Instead, she forces us as readers to imagine a world where caregiving isn't something that happens to a select few unfortunate people, but as a community effort that we can all contribute to and maybe one day benefit from those contributions. At the core of all family caregiving (and "family" is used loosely here, and can include anyone you choose) is love. As a former caregiver to a parent with cancer, I kept nodding and sobbing the whole way through. Everyone should read this book.

[Julie · Rating 5 out of 5]

Giddy-up and find your spurs because I'm going to get on my "high horse" and yell at y'all to READ this book. Kenway puts a human face on the crisis occurring and looming in every human's life. How to honor and fund and support care givers, whether paid or unpaid. Too many (mostly) women are thrust into caregiving causing loss of income, career trajectory, and endangering their own health because as a society we have collectively and completely buried our heads in the sand. We, none of us, want to face that we will all need to be cared for at the end of life and likely will be required to perform unpaid caregiving for a loved one. It shouldn't be so lonely. It shouldn't be so costly. Kenway offers some solutions and bags of food for thought.

[Gato Negro · Rating 5 out of 5]

This book will gut you like a fish if you are a caregiver.

I wanted to personally call all the caregivers I know and say "READ THIS!" but honestly, it would be like offering a police officer a book about cops. I think it's safe to assume almost no one (especially caregivers who lack support) wants to read about the hardship they endure every day.

It's not a book for those looking for comfort or escapism. She holds a mirror up to every caregiving moment, both the blessed moments and the lousy ones.

This author's experiences are so raw and real. It is a true masterpiece on this very timely and difficult subject.

[Colette · Rating 5 out of 5]

This is the most thought provoking book I have read in a long time. It's part memoir, part social analysis, and part rallying cry for something better. You might think you know what that solution is, but unless you've lived through caring for a loved one then I think that's unlikely. I certainly didn't. Please order it and read it because care will become your life, eventually.

[Kathleen · Rating 5 out of 5]

Quotes:
“Let’s teach [our children] that to care for one another, especially when someone is in need, is a beautiful thing,a thing possibly more important than anything else in our world.”

“…our love and care will be of equal importance to ideas about productivity and profit creation,and that importance will be enshrined in law. “

[SeanieC · Rating 4 out of 5]

I had to read this book for a university class. I did not expect to cry reading the introduction.

This was an eye opening experience that taught me a lot about the caregivers in my life and the rest of the world. I have already recommended it to several people and will continue to do so.

Very different to what I usually read but I would still recommend it.

[Edi · Rating 4 out of 5]

I’ll be thinking about this for a while. Chapter 6 ‘On Freedom’ is particularly outstanding, as is the conclusion. At points I had to remind myself that there are many people who’ll come to this book from a different position to me, so whilst I wanted it to run, it did well going at a pace and in a style that can bring so many people in.

[Ella · Rating 3 out of 5]

okay so it was a good book but i read it for school so that immediately takes away a star. also, im not that into nonfiction so i got pretty bored. there’s a lot of good points and i liked the book but i just wasn’t super into it

[Les · Rating 5 out of 5]

It's a warning that for anyone caregiving is late but progress before policy is typically the deal.
For those in the throws of living for another in this way, the lists at the end are affirmation and communion on a level I we probably don't expect but nonetheless very much need.

[Anne Lise · Rating 5 out of 5]

Beautifully written. Informative, engaging, deeply personal without ever being sentimental or private. A must read for all!

[Judith Bowen · Rating 4 out of 5]

Salutary, how hard this is going to be

[George Grosselfinger · Rating 4 out of 5]

I wish more men would read this book

[Hasina F. · Rating 5 out of 5]

When Ms. Kenway told me : "I hope you have some support", little did she know her book was one I would have hoped for 4 years now...

[Donna · Rating 4 out of 5]

Everyone needs to read this even if you think you don't. A little dry/academic at times but extremely thought provoking and very human

[Lucy Briggs · Rating 3 out of 5]

There is a caregiving crisis, yet I'm not sure how it can be solved.

[Sandi Brill · Rating 5 out of 5]

I cannot recommend this book enough, I usually don’t read non-fiction but this was such an important read. Not just for people who are carers but literally everyone.