Policymakers Still Are Not Paying Attention To The Needs Of Frail Elders And Their Families

Nearly all of the Democratic presidential hopefuls have proposed or supported plans to create a federal family leave program that would include those who are caring for frail parents or other relatives. That’s gratifying. It’s too bad that in this week’s debate, all but Sen. Kamala Harris (D-CA) appear to have forgotten the fact.

They were happy to chime in with their support for family leave for parents caring for newborns after one of the moderators framed the question in terms of parental leave. But it never occurred to any of the candidates—except Harris—to mention that their plans would apply to family caregivers as well as new parents.

Sadly, this reflects a lack of awareness most politicians have for the experiences of family members who   make enormous physical, emotional, and financial sacrifices to care for loved ones. They cut back work hours or quit their jobs entirely, suffering enormous financial loss. They sacrifice precious time with spouses and children. They risk injury lifting frail relatives who cannot get from a bed to the bathroom on their own.

Lack of awareness

This lack of awareness by politicians is both strange and short-sighted. A new report by AARP estimates that in 2017, about 41 million family members in the US provided as much as 34 billion hours of unpaid care to frail parents or other relatives. And it estimated the economic value of that care was about $470 billion.   

Those estimates may be high. Others calculate that only about 20 million Americans are caring for adult relatives. Since studies rely on self-reporting and many family members don’t think of themselves as caregivers, it is hard to know exactly how many there really are. But it is at least tens of millions. And the reality is that even if you are not a caregiver now and have not been one in the past, you likely will be one at some time in the future.

Seventy percent of older adults will need some personal are before they die, and 50 percent will need a high level of support.

As medical technology and public health improve, many of us are living longer. But increased life expectancy in old age and among those with disabilities means we are living longer with functional or cognitive limitations. And that means we need more help.

Hidden caregivers

The reality is that more than 8 of 10 frail older adults live in the community, and not in nursing homes or assisted living facilities. And the vast majority rely on family members and friends to help them with daily activities, from shopping to bathing.

Yet family caregiving remains hidden. Caregivers rarely talk about it. That’s especially a problem with men, who make up at least 40 percent of family caregivers.

And caregivers are notoriously poor political advocates. The reasons are complicated but, in part, may be the result of lack of time. Somebody trying to balance a job, kids, and the latest crisis with mom’s care probably doesn’t have time to go to a town meeting or testify to a legislative committee.

What must change?

That brings us back to those presidential candidates and family leave. Politicians understand the need to take time off after a baby is born or adopted. But caring for frail adults still is not top of mind. So even after politicians have sponsored bills or put out white papers that promise support for caregivers, they still forget about them.

What will change this? Caregivers must raise their profiles and find time to advocate. The Scan Foundation, a leading supporter of aging research and program development, is trying to attract attention to the issue by sponsoring a float in next January’s Rose Parade in Pasadena. The riders will include a Wisconsin couple caring for a mom.

A PR gimmick? Sure. But family caregivers need to be seen, and remembered, by policymakers.

As the US ages, government and communities need to act rapidly to keep up with the needs of frail older adults. We are in a period where  a wide range of solutions is bubbling to the surface—long-term care financing reform, an expansion of Medicare to include some personal supports, creative new ways of delivering Medicaid benefits to frail elders and younger people with disabilities, and, yes, family leave.

But the goal of creating the best possible quality of life for frail elders, younger people with disabilities, and their families is competing in the policy marketplace with dozens of other interests.  Winning that competition means that the next time political candidates are asked about parental leave, they reply, “I’m talking about family leave, and that includes those caring for their parents.”