Caregivers Need Help and Know What They Want – Center for Retirement Research

About 38 million family caregivers spend an estimated 36 billion hours a year caring for their loved ones. The patchwork of federal and state aid available to them is no match for the weight of this burden.

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

Yet direct payment was the most popular policy: 44 percent of caregivers who participated in recent focus groups said it was their top choice among various financial aid options.

Direct payments also happen to provide greater financial leverage. Caregivers were not informed of this fact during the focus groups. But the researchers estimated that direct payments would add up to a larger sum — $76,000 — over a 7-year period, which is the average length of care.

“We don’t have unlimited money,” said one caregiver in focus groups, organized by researchers at the University of Massachusetts, Boston, and the Center for Retirement Research. “When my mother was sick, it would help.”

Direct payments were more popular among blacks and Hispanics, who tend to be young adults who care for a parent or grandparent rather than a spouse. They are also likely to provide a high level of care, with half of them spending up to 60 hours each month – a level that forces some to stop working.

The second most popular option was to reimburse caregivers for things like renovating a home with a wheelchair or accessible bathroom or purchasing computer software for people with cognitive, speech or hearing disabilities.

Twenty-four percent of focus group participants, who were evenly split between high- and low-income earners, preferred this option.

Caregivers said the refund 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 refund is very small – about $6,700.

The second most important policy, from a financial perspective, would be to pay for separate care to give the primary caregiver a much-needed break. This may mean funding senior day care for elderly parents or a home health aide for elderly spouses or disabled children.

This policy will provide over $17,000 in lifetime coverage on average. However, only 12 percent of caregivers in the focus groups were interested.

But one saw a clear benefit: “It would be so nice to have time not to worry about being here … so I can 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 a credit on the Social Security earnings record for caregivers who spend time out of work. This policy was approved by 12 percent of participants.

But a long-term payment from Social Security — years later in their retirement benefits — was of little interest to people who need support today. “I’m not [going to] retire for another 20 years,” said the caretaker. Tax credits were less popular.

Paid family leave policies already in place in 14 states were also deemed ineffective. No one chose this as their top choice. The policy proposed in focus groups would pay caregivers 60 percent of their salary for up to 12 weeks if someone in their family becomes seriously ill.

Some participants are aware of these programs. But they say paid leave won’t help unemployed caregivers, while others are concerned the time limit on benefits may or may not apply to other types of workers, including the self-employed.

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

Reading this in short by Marc Cohen, Anqi Chen, Claire Wickersham, Christian Weller, and Brandon Wilson, see “Which Long-Term Support Policies Are Best for Caregivers?”

The research reported here was conducted in accordance with a grant from the US Social Security Administration (SSA) funded as part of the Retirement and Disability Research Consortium. The views and conclusions expressed are solely those of the authors and do not necessarily represent the views or policy of SSA or any agency of the Federal Government. Neither the United States government nor any of its agencies, nor any of its employees, makes any warranty, express or implied, or assumes any legal responsibility or liability for the accuracy, completeness, or usefulness of the contents of this report. Reference herein to any particular commercial product, process or service by trade name, trademark, manufacturer, or otherwise does not imply endorsement, recommendation or favor by the United States Government or any agency thereof.