Thirty-five years ago, former First Lady Rosalynn Carter founded the Rosalynn Carter Institute for Caregivers (RCI) because she understood the joys, trials and tribulations facing caregivers and she knew firsthand just how many Americans were affected by the issue.
As Mrs. Carter famously said, “there are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers.” Her point was that caregiving is a nearly universal experience. It will affect all of us at some point in our lives. She recognized – long before most of us – that caregivers serve as the backbone of this country and they are in crisis.
Today there are more than 53 million family caregivers in the U.S. who care for someone who is aging, ill or disabled — often at the expense of their own mental, physical and financial wellbeing. While the numbers vary among reports, women account for at least half of all caregivers, with some researchers estimating that as many as 61 percent of caregivers are women.
Beyond their sheer numbers, the stress of caregiving also tends to weigh more heavily on women than their male counterparts. Women’s caregiving duties are likely to be higher-intensity tasks, they are more likely to co-reside with their care recipient and they are more likely to earn lower incomes than men, adding another layer of stress to the situation.
Women who provide 36 or more hours of weekly care for an ill or disabled spouse are nearly six times more likely to report depressive or anxious symptoms than their non-caregiver counterparts. Caregiving women are also twice as likely as non-caregiving women to forgo their own needed medical care. Perhaps as a result, they have worse health than non-caregiving women. More than half of all female caregivers have one or more chronic conditions, and one-quarter report difficulty getting their own medical care.
The effects of caregiving on women go beyond physical and mental stress, affecting their financial stability as well. Women in caregiving roles may forgo or reduce their earnings, may be passed over for promotions and may be entirely pushed out of the labor force. The financial implications are stunning. Women over 50 who leave the workforce to care for an aging parent are estimated to lose more than $324,000 in wages and retirement savings.
In a time when the universal mantra is about wellness and mental health, taking care of those who take care of others should be at the top of our to-do list.
Can we imagine the nightmare if those 53 million family caregivers didn’t exist? If each family caregiver were only assisting one person (and oftentimes it’s more), it would indicate that 53 million people would be in need of part-time or full-time assistance. Where? By whom? They would have to be absorbed by the current long-term care infrastructure, which is already stressed beyond its limits. To put it simply: the survival of our health care system hinges on family caregivers – most of whom are women.
You may have heard of the “sandwich generation,” or you may fall into this category yourself. This is a group of Americans in midlife who are simultaneously providing care to their children and their aging parents. As if that responsibility isn’t enough, many members of the sandwich generation find a third claimant on their time: their employer. I would wager that most of us know someone who fits the bill – juggling the day-to-day needs of kids, an ailing parent and a career, while simultaneously being told by society to make time for “self-care,” as if time for such things exist in this scenario.
What women caregivers need goes far beyond work-life balance or some time for themselves. What women caregivers – and all caregivers – need are structures of support at all levels. That need was highlighted by the COVID-19 pandemic, which helped to shine a light on this vulnerable and overlooked population, prompting Mrs. Carter to write in “The Hill”, “COVID has demonstrated how critical caregivers are to a healthy American society, and we must seize this moment to invest in institutions that support them... . At present, we are charging caregivers with one of our nation’s greatest responsibilities — tending to people in need — without securing their ability to succeed ... it is our responsibility to ensure that they receive the resources they require both now and in generations to come.”
With that charge, RCI launched its first-ever national caregiver advocacy and peer-support network, called the 4Kinds Network, to fundamentally change the way caregivers are seen and supported. Systems of support for caregivers are fragmented, inaccessible and oftentimes nonexistent. Through the 4Kinds Network, RCI is mobilizing former and current caregivers to harness their collective power so that they may be recognized, respected and resourced in all the ways they deserve.
The International Women’s Forum of Georgia (founded by Mrs. Carter) celebrated International Women’s Day (IWD) by hosting a symposium March 2 where we applauded this effort to bring the plight of caregivers into sharper focus. I encourage everyone reading to take stock of the caregivers in your lives — see them, support them and seek help from organizations like ours that are there for them. Our society’s wellbeing, and our economy hinges on them.
Dr. Jennifer Olsen is CEO of the Rosalynn Carter Institute For Caregivers.
For more information, visit IWF Georgia Forum at www.iwfgeorgia.org or IWF Global at www.iwforum.org.
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