It’s not a hot-button campaign topic like immigration or national security, but as the United States faces a looming crisis in family caregiving, advocates are pushing to make the issue visible on the political landscape during this election campaign season.
About 40 million Americans care for family members, comprising an unpaid workforce worth around $470 billion a year, according to AARP. Most of those needing care are elderly; the typical caregiver is a 49-year-old woman caring for her mother.
But the ratio of potential family caregivers to the growing number of older people is in steep decline. In 2010, there were seven potential caregivers available for each person 80 or older; by 2030 there will be only four, and by 2050, when baby boomers are between 86 and 104, there will be fewer than three — not enough to provide the kind of care that previous generations have relied on.
Getting politicians to focus on this gap is the first step to finding a solution, advocates say. Aside from Hillary Rodham Clinton, who cared for her own aging mother at home and has called for more support for family caregivers, most presidential candidates have been silent on the topic.
But others are stepping in.
A congressional caucus was formed in March to focus on the needs of family caregivers. This summer, Rep. Michelle Lujan Grisham (D-N.M.) reintroduced a bill to create a national Care Corps program, modeled after the Peace Corps, in which volunteers would help family caregivers. And Rep. Nita M. Lowey (D-N.Y.) introduced legislation that would give caregivers a Social Security earnings credit when they take unpaid time off from their jobs to provide care.
The bipartisan Recognize, Assist, Include, Support and Engage (RAISE) Family Caregivers Act, introduced in July, would mandate the development of a national strategy to support family caregivers. And AARP’s Caregiver Advise, Record, Enable (CARE) Act would require hospitals to adequately inform and, if necessary, train family members who care for relatives coming out of the hospital. So far, 18 state legislatures have passed it.
“For the first time, people are saying, ‘This is something Congress should focus on,” said AARP Executive Vice President Nancy LeaMond.
It has been a long time coming, advocates say. In 2013, Congress repealed the Community Living Assistance Services and Supports Act, a long-term care insurance component of the Affordable Care Act. And while the federal Commission on Long-Term Care later that year called for national policies to support family caregivers, advocates say there has been little follow-up.
Now, they hope to force the conversation up from the grass-roots level and into the legislative arena. The advocates’ hope is that, similar to what happened with same-sex rights, increasing awareness will eventually spur political action.
“We’re struggling to help our neighbors. We’re struggling to help our grandparents. We’ve been seeing this as a ‘just our family to deal with’ and not seeing that there are ways from a policy standpoint to make this easier,” said Victoria Walker, national coordinator of the Family Caregiver Platform Project, a coalition of organizations seeking to get caregiving onto individual states’ Democratic and Republican platforms.
“We’re trying to have enough conversations going at these local levels so that next time people hear mention of it, they’ll think, ‘Oh yeah, we’ve been talking about this for a long time; why haven’t we done anything about it?’ ” she said.
Doing something about it can mean offering caregivers help with their duties, giving them tax breaks or providing Social Security credits when they leave work to care for a family member.
The Platform Project, led by the Center for Elder Care and Advanced Illness, provides a roadmap, model language and timelines for political party activities, as well as suggestions on engaging local politicians. The project is not focused on getting a specific piece of legislation passed but rather on tailoring a platform based on what is most needed.
So far, organizers are active in 16 states. In states where parties adopt national platforms, they hope to pass resolutions with wording about caregiving.
Caring for a relative exacts a financial toll, both in terms of lost income and additional expenses. Those who care for people with Alzheimer’s disease typically spend more than $50,000 a year on expenses related to their duties.
Several countries, including Germany, Italy and Japan, have starker caregiver ratios but more government spending on social support such as meals and transportation. Most industrialized nations spend more on social services than on medical services, but the United States spends significantly more on medical services, according to the health-care journal BMJ Quality & Safety.
“Family caregiving is having a moment, but there’s a long way to go,” said Lori Simon-Rusinowitz, associate professor of health administration at the University of Maryland. “People are realizing if we don’t do something to help family caregivers and they go away, it’s going to cost us so much more.”