Family Caregivers Are Unseen Heroes
Former first lady Rosalynn Carter said it best: “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.”
You don’t often meet someone and hear the word “caregiver” as part of who they are. Yet there are an estimated 53 million family caregivers in the United States, and the number is expected to grow as the U.S. population ages. Family caregivers provide the overwhelming majority of long-term care in the U.S.
A family caregiver is defined by the nonprofit support organization Family Caregiver Alliance as an unpaid individual (usually a partner, family member, friend, or neighbor) involved in assisting someone with activities of daily living and medical tasks.
There are many reasons people might not identify as caregivers. It’s not a job title; some cultures or individuals don’t view this as a role that someone fills; some people don’t feel worthy of the label of caregiver. So if you don’t think of yourself as a caregiver, it’s hard to identify specific needs you might have as such, much less ask for help.
While family caregiving gets little recognition, it can be life-changing for both the caregiver and recipient. For the caregiver, it often begins with feeling overwhelmed. A recent CaringBridge survey reported that over 60% of caregivers called caregiving “stressful” and “very stressful,” while over 30% reported heavy financial strain.
Family caregivers have nonetheless become an important part of the health system. Primary care providers cite the benefits of working with family caregivers, reporting 88% better patient outcomes and 56% lower hospital readmission rates. And family caregivers often help older adults remain at home, avoiding the cost of hospitals and long-term care facilities, according to a report by the Center for Health Care Strategies Inc.
Those better outcomes come at a cost, however. Without support, caregiving takes a major personal and economic toll. According to the same report, six in 10 family caregivers report cutting work hours, taking leaves of absence, or receiving job performance warnings. And the toll on their physical and emotional health is real, with 20% reporting negative impacts to their physical health and 40% to their emotional health. In fact, long-term caregivers have a lower life expectancy, Susan W. Golden reported in a Stanford University working paper, “Landscape of Caregiving Innovations.”
So what can we do?
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1. If you’re an employer, know your responsibilities.
Encourage employees to learn about and use sick and safe leave as needed. In fact, the new Family Leave Act in Minnesota recognizes the need for caregiver leave, providing for up to 80 days, starting this year. Likewise, a national bipartisan bill, the Lowering Costs for Caregivers Act of 2023, would allow people to use their tax-free health savings accounts and flexible spending accounts on medical expenses for their parents, as well as spouses and dependents.
2. Know your personal rights.
In the hospital setting, the CARE (Caregiver Advise, Record, Enable) Act requires hospitals to do three things:
- Ask patients if they have a family caregiver.
- Contact that person if/when the patient is to be discharged or transferred.
- Teach the family caregiver how to provide the care the patient will need after discharge.
3. Learn about caregiving legislation.
In September 2022, the U.S. Department of Health and Human Services sent to Congress the federally mandated 2022 National Strategy to Support Family Caregivers. It includes nearly 350 actions the federal government is taking to support family caregivers, and more than 150 actions that can be adopted at other levels of government and across the private sector to begin to build a system that ensures the family caregivers have the resources they need to maintain their own health, well-being, and financial security while providing crucial support for others.
4. Lastly, as someone who was, is, will be, or will need a caregiver, start talking about caregiving.
Identify your caregiving moments and openly share your own journey — the good, bad, and ugly. The more we are brave enough to talk about caregiving as openly as we talk about what we did over the weekend, the more we normalize this important role, in and out of the workplace.
