Caregivers Need Help and Know What They Want

Some 38 million family caregivers spend an estimated 36 billion hours a year caring for their loved ones. The patchwork of federal and state assistance available to them doesn’t match up to the weight of this burden.

One policy in particular stands out as something they feel would help them: direct payments for their time spent as a caregiver. While this benefit exists under numerous state Medicaid programs, these programs help limited numbers of people because the eligibility requirements are very difficult to meet.

Yet direct payments were by far the most popular policy option: 44 percent of the caregivers who participated in recent focus groups said this was their top choice among various options for financial assistance.

Direct payments also happen to give the biggest financial boost. The caregivers were not informed of this fact during the focus groups. But the researchers estimated the direct payments would add up to a substantial sum – $76,000 – over a 7-year period, which is the average time span for caregiving.

“We don’t have unlimited funds,” one caregiver explained in the focus groups, which were organized by researchers at the University of Massachusetts, Boston, and the Center for Retirement Research.  “While mom was sick, it would’ve helped.” 

The direct payments were especially popular among Blacks and Hispanics, who are often younger adults taking care of a parent or grandparent rather than a spouse. They are also likely to provide high levels of care, with half of them devoting about 60 hours each month – a level that forces some to drop out of the labor force.

The second most popular option was reimbursing caregivers for the cost of things like modifying a home with a wheelchair ramp or an accessible bathroom or buying computer software for people with cognitive, speech or hearing disabilities.

Twenty-four percent of the participants in the focus groups, which were equally divided among high- and low-income individuals, preferred this option.

The caregivers said the reimbursement would improve their quality of life. Many of these big-ticket items are not covered by insurance, forcing them to pay out of pocket. But the lifetime value of the reimbursements is relatively small – about $6,700.

The second-most valuable policy, from a financial standpoint, would be paying for alternative care to give the primary caregiver a much-needed break. This might mean funding adult day care for elderly parents or a home health aide for aging spouses or children with disabilities.

This policy would provide more than $17,000 in lifetime assistance on average. However, only 12 percent of the caregivers in the focus groups preferred it.

But one person saw a clear benefit: “It’d be very nice to have the time not to worry about being here … so I could go and do what I want.”

Family caregivers are often forced to stop working or reduce their hours to care for a family member. One way to help them is a proposed federal policy to provide credit in Social Security’s earnings record to caregivers who spend time out of the labor force. This policy was favored by 12 percent of the participants.

But the long-term payoff from Social Security – years later in their retirement benefits – had little appeal to people who need support today. “I’m not [going to] retire for another 20 years,” a caregiver said. Tax credits were even less popular.

The paid family leave policies already in place in 14 states were also perceived as not very useful. No one selected this as their top option. The policy proposed in the focus groups would pay caregivers 60 percent of their wages for up to 12 weeks if someone in their family had a serious illness.

Some participants knew about these programs. But they said paid leave wouldn’t help caregivers who aren’t employed, and others worried about the time limit on the benefits or that this was impractical or unviable for some types of workers, including the self-employed.

Direct payments, the caregivers say, are the best way to compensate them for the financial burden of caring for aging and disabled family members. 

To read this brief by Marc Cohen, Anqi Chen, Claire Wickersham, Christian Weller, and Brandon Wilson, see “Which Long-term Care Support Policies are Best for Caregivers?”

The research reported herein was performed pursuant to a grant from the U.S. Social Security Administration (SSA) funded as part of the Retirement and Disability Research Consortium. The opinions and conclusions expressed are solely those of the authors and do not represent the opinions or policy of SSA or any agency of the Federal Government. Neither the United States Government nor any agency thereof, nor any of their employees, makes any warranty, express or implied, or assumes any legal liability or responsibility for the accuracy, completeness, or usefulness of the contents of this report. Reference herein to any specific commercial product, process or service by trade name, trademark, manufacturer, or otherwise does not necessarily constitute or imply endorsement, recommendation or favoring by the United States Government or any agency thereof.