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WHAT IS THE STATE OF CAREGIVING IN THE U.S.?

The number of unpaid family caregivers in the U.S. increased by more than 10 million people from 2015 to 2020.

DID YOU KNOW?

The prevalence of caregiving for adults has risen from 16.6% in 2015 to 19.2% in 2020 – an increase of more than 8 million adults providing care to someone age 18 or older.

Source: AARP

WHAT YOU’LL LEARN

  • Describe the role of caregiving

  • Reflect on the value of caregiving in our social worlds

  • Explain what possible changes, on a larger and interpersonal scale, might support caregivers’ labor

Who are the caregivers?

Today in the U.S., more than 1 in 5 Americans are family caregivers. Roughly 20 percent of the country’s population provided care to an adult or child with special needs in the last year, according to a 2020 joint study by the National Alliance for Caregiving and AARP. That’s 53 million American adults who identify as caregivers — over 10 million more than in 2015 — attributable to the aging Baby Boomer generation.

Given those numbers, caregivers likely affect every aspect of society, from healthcare to the economy and social services. As the country continues to age, the need to support caregivers will only increase.

Women are overwhelmingly the nation’s caregivers. Of the 53 million Americans who identified as caregivers in 2019, 61% were women, versus 39% men. Most caregivers (of adults) care for a relative, typically a parent, spouse or partner, grandparent, or adult child, though 10% provide care to a friend or neighbor.

“Not only are there more caregivers but, on average, they’re caring longer, and often caring for multiple people,” says C. Grace Whiting, president and CEO of the National Alliance for Caregiving.

Women tend to earn less than men, so the economic incentive for typically unpaid care work is that it makes more financial sense, among other reasons. “So there’s a gender equity issue that drives it,” Whiting said. “Women may be sandwiched between multiple people with healthcare needs and disabilities and also minor kids at home,” Whiting said.

What issues do caregivers face?

Caregiving can be a rewarding experience, but it can come at a cost.

A 2021 study published in The Gerontologist compared family caregivers to non-caregivers during the COVID-19 pandemic and found significantly higher rates of anxiety, depression and sleep disturbances, plus other concerns, among the caregivers.

In addition, in 2018, the initiative Embracing Carers, launched by Merck, released results from their survey to determine the needs of caregivers and what caring for others does to their own well-being. Issues with identity, compassion fatigue, growing debt, issues at work, burnout and isolation were prevalent.

“Twenty percent of caregivers said they felt lonely, but what really shocked me was that, if you lived in the same household as the person you cared for, you were more likely to say that you felt lonely,” Whiting said.

“They may experience moral injury because we see this person we love dealing with a terrible situation, and in some cases, who can’t express gratitude or appreciation for what we are doing, and all of that really drives burnout,” she said. “During the Covid-19 pandemic, it became much more intense. We need better solutions to tell caregivers, ‘We see you and know you need help and support.’” 

How can we care for caregivers?

The RAISE Family Caregiving Advisory Council submitted a report in September 2021 to Congress, outlining the challenges faced by family caregivers, plus programs currently available to support them. The report also offered 26 recommendations, which ranged from increasing awareness about the value of caregivers to accessing counseling, respite care, peer support, in-home medical task training, and practical assistance like transportation, among others. “We need to push systems to notice and to offer that assessment of need and support,” Whiting said.

Recognition and thanks can go a long way, too. Jenn Chan is a San Francisco-based caregiver support group facilitator and founder of the Senior Shower Project, which celebrates the milestone of becoming a caregiver to an older family member or friend. Through caregiver greeting cards and shower party kits, she wants to change the conversation around the role of the caregiver and celebrate the millions of Americans who take on caregiving responsibilities.

She got the idea while at a baby shower, when she saw the outpouring of support for the new mother. “I was a young caregiver, but I didn’t have any peers who were going through caregiving,” says Chan, who became the caregiver for her grandmother at age 25. “My peers were advancing their careers, dating, and socializing, but when I talked about caregiving duties (they) didn’t really understand.”

The showers are also good for intergenerational mixing. “It’s about normalizing the conversation,” Chan says. “People aren’t used to talking about what happens to their loved ones when they get older and more dependent.”

Pondr This

  • What does a good “quality of life” mean to you, especially as you age?

  • Consider all of the family caregivers in your life. Is there anything you can do to help them?

  • Why might we, as a culture, celebrate certain milestones and shy away from others that may seem less glamorous or joyful?

FOR LEADERS

  • How do you define “care”?

  • What practices of caregiving occur in your workplace?

  • What are some steps you can take to support your employees who are caregivers?

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    Berglund specializes in working in some of the most remote corners of the world, because she feels strongly about giving voice to people who are rarely heard. She has worked in over 30 countries, including Angola, Rwanda, Democratic Republic of Congo, Sri Lanka, India, and Ecuador.

    She is the owner of Gold Dog Media, Inc., and lives with her two amazing border collies in Washington State.

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  • Jan Jarvis has been a journalist for 30 years and has covered virtually every beat from entertainment news and municipal government to crime and education. Working for a Texas newspaper gave her the opportunity to tell the stories of many fascinating people, including the first face-transplant recipient in the country. She is now a freelance writer.

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