The Washington PostDemocracy Dies in Darkness

Caregiving in U.S. to be focus of new congressional caucus

A new congressional caucus has been formed to focus on the needs of family caregivers in the United States.

Sens. Kelly Ayotte (R-N.H.) and Michael Bennet (D-Colo.), along with Reps. Diane Black (R-Tenn.) and Michelle Lujan Grisham (D-N.M.), announced Tuesday that they created the Assisting Caregivers Today (ACT) caucus with the backing of AARP, the American Health Care Association, and other groups with a stake in providing health care and other support for caregivers.

“This is not a partisan issue. This is an issue that impacts every single American,” Ayotte told a press conference at the Capitol on Tuesday.

Ayotte, other leaders of the new caucus and some of their constituents shared stories of their own informal, unpaid care-giving arrangements that can fray nerves and family budgets. Overwhelmingly, the national care-giving burden has been met by family members—and, in most cases, female family members who juggle childcare, careers and their own needs with caring for an adult relative.

[Women need time off from work the most but often get it the least]

Tobey Partch-Davies, who is project director at the Institute on Disability at the University of New Hampshire, talked about the challenges she faced while caring for her teenage daughter, Laura, who was diagnosed with a congenital disability soon after birth, and her 84-year-old mother–in-law, who developed dementia. As a wife, mother to three other children, and a daughter, Partch-Davies said she saw her care-giving duties as a “labor of love” that nevertheless came at tremendous cost. Her own daughter’s disabilities alone required intensive attention, she said.

“Scheduling and attending her appointments alone was the equivalent of a part-time job,” she said. “Being Laura’s primary caregiver means I’m riding the roller coaster with her. . .Marriages are strained. Sibling relationships are strained.”

The four lawmakers offered few specifics of the types of policies they might pursue, and all were whisked away by staff without taking questions.

But Nancy A. LeaMond, AARP executive vice president, whose organization led the effort to form the caucus, said the first step is educating members of Congress on the issues that caregivers face. One possibility would be to pursue the sort of national plan that Congress created to tackle Alzheimer’s disease.

[Skin test could help detect Alzheimer’s, Parkinson’s diseases]

“We hope they come together to find some commonsense approaches,” LeaMond said. She also said the caucus was less an expression of AARP’s legislative muscle than an emerging need across the country. “This isn’t about AARP. This is an issue that affects seven out of 10 Americans.”

The formation of a new caucus comes as demographic changes in the United States create an older society. With a larger proportion of aging Americans, the need for more caregivers and the resources to support them is increasing.

AARP officials said more than 42 million family caregivers provide unpaid care for older family members, largely so that the older person can live independently in his or her home. Their tasks may include driving their older relatives to doctors’ appointments or groceries, arranging other in-home care, or directly helping their older relatives to dress, bathe, or eat. The value of that unpaid care is estimated at $450 billion a year, AARP said.

The lobby said its 2015 national caregiving survey of registered voters who are at least 40 years old found broad support for improving resources for family caregivers and alleviating their burden. More than 64 percent of surveyed caregivers reported feeling emotionally stressed, while 39 percent felt financial strains, the AARP survey says. Yet 94 percent still reported feeling that it was important to offer that care to a loved one so that the person could remain at home.

The survey found that many would like to see additional services to help them as caregivers. These include having better access to information about what resources available and additional respite care that would allow them to take a break from their duties.

“We need more support,” Partch-Davies said.