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Who cares for the caregivers?

Plus, an encouraging Alzheimer's intervention.

How We Care is presented by Spotlight PA. Support this vital journalism by clicking here.

This week: A Q&A with caregiving researcher Emily Kenway, Pa. nursing homes face closures and bankruptcies, and an encouraging Alzheimer’s intervention.

Husband and ailing wife seated at a table together.

Pat Loughney (right) cared for his wife, Candy, until he couldn’t anymore. A new book explores the hidden crisis of caregiving around the world. (Quinn Glabicki for Spotlight PA / PublicSource)

Hidden Conditions

When writer and activist Emily Kenway became the caregiver of her terminally ill mother, her life as a young professional in London was turned upside down. Tending to her mother, who was diagnosed with leukemia and two types of lymphoma, consumed Kenway’s days and nights, leaving her brutally exhausted and isolated.

Her latest book, Who Cares: The Hidden Crisis of Caregiving and How We Solve It, argues this deeply personal experience is universal. Kenway travels around the world to speak with people about the vital, invisible labor that often erodes caregivers’ health and finances. In this interview, which has been condensed for clarity and length, Kenway details her findings, explains how demographic trends will make more people caregivers, and argues for systemic changes to make caregiving less traumatizing.

Spotlight PA: You became your late mother’s caregiver in your early 30s. What was that switch like, from pursuing a career, pursuing romance, to being a full-time caregiver?

Kenway: My mum died when she was 65. And she was sick for about five years. I was about 30 when she first got sick.

And I was working a lot of the time while I was also caring for her. Many people who are caregivers are also trying to juggle paid work, because, of course, we need money to survive.

You traveled all over the world for this book and found some pretty striking similarities. One of them, as you just mentioned, is the fact that it can be very hard to work to generate income while doing caregiving. What are some other similarities?

No matter where you go — India, Bangladesh, Minnesota, London, Tanzania — you'll find people saying the same things.

One of those is poverty and the inability to earn, either because the caring needs are so intensive, or because there isn't access to flexible work that can accommodate the complexity of the needs that you're responsible for.

Another heartbreaking commonality around the world is dire mental and physical health impacts. You'll find in every single country in the world that caregivers’ mental health is worse than noncaregivers — higher rates of depression and anxiety, for example.

You'll also find things like higher rates of heart disease, higher rates of diabetes, higher mortality rates for caregivers than the noncaregiving population.

They experience something psychologists call role engulfment, where they are just totally taken over by and absorbed into this role of being a caregiver and feel this kind of loss of identity.

In your previous book you wrote about modern-day slavery, and you made the point that in certain countries where slavery was allowed, enslaved people did the caregiving. I'm wondering if that legacy of slavery has continued to shape how we think and treat caregiving?

Yeah, there's two strands to why we now ignore, make invisible, don't value, don't support care.

As you've just described, one is that historically, the world was built on a two-tiered system: the free and the enslaved. And the enslaved people were used, obviously, to build industry, agriculture, profit. And they were also used to perform domestic and caring tasks for the slave owners.

You can directly trace from the abolition of slavery in the U.S. where people of color who had formerly been enslaved were only allowed to do certain jobs at first. And some of those jobs were caregiving jobs. So it's actually not surprising historically that there's a disproportionate number of people of color in caregiving roles. And it's therefore not surprising either, that those roles are really underpaid.

And what happens is that kind of twins with this other strand, which is about patriarchy. So yes, enslaved people did caring labor, but who were the other kind of group of people that traditionally did caring labor? It was women.

Something else that you explore is that sometimes caregiving can be really complicated — like maybe caring for a parent who wasn't a great parent.

And I've observed this in my own reporting that there's this sort of hushed truth. How do you care for someone who isn't nice to you — who maybe has never been nice to you — but you still love them?

I deliberately wrote about it in places in the book because I'd never ever seen that talked about anywhere.

And my situation was not tremendously straightforward. My mom wasn't the easiest person, as much as I loved her. And so it makes you feel even more isolated and kind of excluded from society, to see the only representations of care being all kind of fluffy and nice, rather than what it is often, which is like a grind and a bit of a battle.

Everyone knows love is messy, especially with family members who we haven't chosen. And yet care is disallowed from being messy.

You offer some solutions. And what I found interesting is that your solutions aren't just, you know, people need to be nicer to your neighbors. And it's not just like the government needs to put in more money. You're really advocating for a shift within every facet of society to make caregiving less of a burden.

What I would like to see from governments is firstly a meaningful commitment that nobody should be pushed into poverty because they have caring responsibilities. That would mean things like a right to flexible work, paid leave from work, a protection from discrimination against you as a caregiver.

If you were not working, it would mean a livable income. The only way you can get paid an income to care for your loved ones is if you are a paid care worker and you happen to be employed by your loved one. That's kind of insane, right?

You also talk about very real demographic pressures. People are having fewer children, baby boomers are aging. And though caregiving is not just for the elderly, there will be more elderly people who need care in the coming years.

The nuclear household is very restrictive in what it means from a caregiving perspective. Because if we expect our caregiving to come from our family members — our biological, adoptive, marital family members — that’s a very small number of people. This is really unsustainable when you look at demographics. You know, many people don't live with their families anymore. And instead, we need to start learning to cultivate the practices of family with a wider pool of people.

We can learn from lots of communities over time in history. During the AIDS pandemic, many people who were suffering with AIDS had been excluded from their families who were homophobic. And so they had to create this kind of different form of kinship, this family of choice with one another in their time of needing care.

Sarah Boden, for Spotlight PA

Reader Resources

A large nursing home complex.


CRITICAL CLOSURES: “Nursing home closures and bankruptcies continue among many states, putting pressure on existing nursing homes to take on extra residents even as the workforce shortage persists and challenging staffing requirements are on the horizon,” Skilled Nursing News reports. Full story →

Big Stories

HEAT CHECK: “Researchers have found that heatwaves are linked to an increased risk of preterm and early births among pregnant people, especially those with low incomes,” Inside Climate News reports. Full story →

PROMISING STUDY: Results from a small study that used lifestyle interventions to help people with mild cognitive impairment or early dementia are giving doctors and advocates new hope, CNN reports. Full story →

The Upside

PHONE PALS: A volunteer with charities that connect lonely older adults with strangers for weekly phone conversations calls the work “enriching” and “mutually beneficial,” The Guardian reports. Full story →

SELF-ADVOCATES: Self-Advocacy Voices, a Pittsburgh-based group, enables people “with disabilities to talk about their interests and stand up for themselves,” PublicSource reports. Full story →

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