States fill family caregiver void left by Congress

Not even members of Congress can avoid the emotional ups and downs that accompany being a caregiver for an older family member. A bipartisan group of lawmakers recently shared stories of their caregiving journeys, the good and the bad. Indeed, caregiving is not a partisan issue—most of us can expect to be affected eventually. 

Rep. Michelle Lujan-Grisham (D-N.M.) shared a bittersweet story about receiving a call from her elderly mother, who wanted to wish her a happy birthday, despite getting the date wrong. Her experience has prompted her to chair the bipartisan, bicameral Assisting Caregivers Today (ACT) Caucus. Rep. Chris Smith (R-N.J.) relayed how caring for his mother when she was diagnosed with brain cancer and early onset Alzheimer’s disease became a family affair. 

{mosads}I joined these lawmakers at a panel discussion hosted by the Gerontological Society of America to raise awareness of the plight of family caregivers and discuss policy solutions to better support them. With more than 18 million family members currently taking care of older adults in the United States—many of them at risk for poor health, emotional stress, and financial harm—supporting caregivers should be one of our nation’s top priorities.                        

The strains on family caregivers are real. According to a study from AARP, when asked to rate their own health, almost 20 percent of caregivers say that it is “fair to poor,” which is double the rate of non-caregivers.

Many caregivers in the United States—about 8.5 million people—are providing care to an older adult with “high needs,” which means they are either struggling with dementia or have two or more self-care needs. These caregivers too often don’t receive training to perform complex medical and nursing tasks like wound care and injections, potentially placing the older adult at risk. This is in addition to the financial strain; on average, caregivers over age 50 stand to lose over $300,000 in lifetime earnings. 

Despite bipartisan support and dozens of personal experiences with the topic, Congress has been slow to resolve these critical problems affecting millions of Americans. There are some promising proposals at the federal level—but it remains to be seen whether they will gain traction in the current Congress. One example is the Recognize, Assist, Include, Support and Engage (RAISE) Family Caregivers Act—sponsored by Sens. Susan Collins (R-Maine) and Tammy Baldwin (D-Wis.)—which calls for the secretary of Health and Human Services to develop a national strategy to recognize and support family caregivers. This strategy includes a public-private partnership to help communities, government agencies, and providers support caregivers. The Senate passed this bill in September, but the House has yet to take a vote. Whatever the result, Congress should continue working to find solutions.

Fortunately, states are taking note of successful new models to support family caregivers, and they are taking action.

Already, 39 states and territories have enacted the Caregiver Advise, Record and Enable (CARE) Act. These bills, which have rapidly spread across the country in just three years, require hospitals to identify and provide education to family caregivers of hospitalized patients. The aim is to ensure that caregivers have the training to carry out medical tasks and reduce the odds that the family member will be readmitted. This is a tremendous achievement, but there is more work to do.

With support from The John A. Hartford Foundation, pilot care models across the country with replication potential are empowering family caregivers. An Alzheimer’s and Dementia Care program at the University of California, Los Angeles provides patient-centered care and coordination—reducing the burden on family caregivers by improving patient independence and function. The program prepares nurse dementia care managers to provide better support to patient families. After three and a half years, participants had $2,100 lower Medicare costs per year than the comparison group and were 33 percent less likely to be admitted to a long-term care facility, likely saving thousands for Medicaid and their families.

We’re also working with The Benjamin Rose Institute on Aging and the Family Caregiver Alliance to develop an online resource with detailed information on approximately 50 evidence-based dementia caregiving programs to encourage community implementation and choice. Resources like these will do wonders for stressed and overburdened caregivers.

Congress needs to rise to the challenge, and look to some of these promising models as inspiration for building better support for family caregivers. We owe it to the more than 18 million Americans and their families who are living these stories each and every day.

Rani Snyder is Program Director of The John A. Hartford Foundation, a private, nonpartisan, national philanthropy dedicated to improving the care of older adults.