Aging Options

Burdens on caregivers are almost never anticipated or planned for

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About 40 million people in America care for a family member, neighbor or friend who has limitations in everyday activities. We call these people “family caregivers.” Most of them juggle work and family caregiving responsibilities, which can seriously affect their physical and emotional health. Together, this invisible workforce provides 37 billion hours of care, which the AARP Public Policy Institute values at $470 billion. That’s 470 BILLION dollars. Hard to get your head around that number. But try. Because it is as much as all of Walmart’s sales. And it is the economic contribution of people who are all around you doing what they can for those who need their help. Maybe it’s you.

What are we doing to support these very important people in continuing their crucial, unpaid work? In the last few years, we have seen some progress. We see more professionals, researchers, policymakers and advocates recognizing the challenges that family caregivers face and advancing solutions.

A state scorecard documents that some state and local policymakers are bolstering legal support for family caregivers. They are protecting family caregivers from employment discrimination, promoting unemployment insurance, and permitting the use of paid sick leave to take a family member to a medical appointment. Several states are mandating hospitals to offer family caregivers instruction in how to perform the medical/nursing tasks that they are expected to take on, including injections, wound care and using complicated medical equipment.

At the national level, federal workers have more access to workplace flexibility and paid sick leave. Congress created a bipartisan Assisting Caregivers Today (ACT) Caucus. And the Institute of Medicine established a Committee on Family Care of Older Adults.

The progress is encouraging, but the pace is slow. We need to do much more to prepare for an aging America and a declining number of potential family caregivers who can help. We need more meaningful public policies and private sector initiatives.

A federal or state tax credit would help ease some of the financial cost of caregiving and improve financial security for the caregiver and the family as a whole. We need to help working caregivers remain employed to prevent an average lifetime loss of $303,880 in forgone income and benefits. Employers should strengthen family-friendly workplace flexibility policies, including flextime, telecommuting, use of existing leave for caregiving duties, and referrals to supportive services.

Anything that reduces the workload would be helpful. Technology might help, especially if it means fewer drives to medical appointments because virtual visits are effective. The “Independence at Home” option to have health professionals come to your home for your Medicare visits could be an enormous help. We also need adequate funding for respite programs to give family caregivers a much-needed break from their caregiving duties.

Our health care and social service professionals need to learn how to communicate with family caregivers, to anticipate their questions rather than wait to be asked — because family caregivers say, “I do not know what I do not know.” We need professionals in all settings to directly ask the family caregiver: “How are YOU doing? What do YOU need?”

There are many more ways we can support our valuable caregivers. You may have other ideas you can send to me at or tweet @susanpolicy. We need private-sector, public-sector and community solutions. We need creativity. And we need them as soon as possible to help members of our $470 billion invisible workforce stay on the job without harming themselves.

Susan Reinhard, Ph.D., RN, FAAN, is senior vice president of the AARP Public Policy Institute and chief strategist at the Center to Champion Nursing in America, which coordinates the Future of Nursing: Campaign for Action.

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