The role of family caregivers in the healthcare system

A growing number of Americans are facing an issue with major health and financial implications: providing care for aging family members.

The issue of caregiving touches the lives of tens of millions of people, creating challenges across generations, as people live longer and require more medical assistance., in cooperation with AARP, convened a special panel to explore “The Role of Family Caregiving in the Healthcare System.”

The panel includes:

  • Nancy LeaMond, chief advocacy and engagement officer for AARP
  • John Poole, a former family caregiver and caregiver advocate
  • Dr. Benjamin Powers, surgical oncologist at UM Capital Region Health
  • Dr. Meena Seshamani, director of the Center for Medicare at the Centers for Medicare & Medicaid Services (CMS)

Baby Boomers are only part of the changing demographic, but they play a large role. By 2030, one-fifth of the U.S. population will be at least 65 years old. While many seniors have healthy lifestyles, more people than ever require daily assistance.

“There are 48 million family caregivers in the United States,” says Nancy LeaMond, with AARP. “To put that in perspective, it’s roughly ten times more than paid family caregivers.”

That puts a huge burden on the nation’s families. LeaMond points out that the issue requires more of people from all walks of life.

“Sixty percent of all those caregivers are women, 40 percent are people of color, 30 percent are millennials and Gen Z (and) seven percent are over the age of 70,” LeaMond says.

In addition, 30 percent are managing care for their parents, as well as their children.

That means taking parents to appointments, shopping and addressing financial matters. But with more care being done in the home, it also means individuals are being called upon to do more complicated medical tasks.

LeaMond points out that these millions of caregivers need to be seen as a key part of the medical care delivery system.

At the same time, nearly two-thirds of all family caregivers work full or part-time.

It’s estimated the unpaid care they provide accounts for close to $600 billion to the economy. That’s more than all out-of-pocket spending on healthcare in the United States.

“So it is a huge economic issue,” LeaMond says, noting that the average caregiver spends about $7,000 of their own money to augment the care for a loved one.

Implications for Medicare, patients  

Dr. Seshamani, before leading the Medicare program she does now, was a practicing physician.

She says it’s important than everyone in the healthcare system recognize that there is a lot more going on patients’ lives, beyond the latest doctor’s office visit.

“We at Medicare are really looking at how we can make sure that the system is having that broader support,” she says. “For example, we just finalized for the first time payments to healthcare providers so they can train caregivers.”

The Centers for Medicare & Medicaid Services (CMS) is also finalizing policies to help patients and their families deal with cancer treatment and other serious illnesses.

Dr. Powers, who deals with cancer patients, points out that a diagnosis doesn’t really begin in the hospital, but requires patients and their families to identify symptoms before seeking out medical care.

“Caregivers have an incredible role in not only navigating patients to get to see a healthcare provider, but then across the entire phase of diagnosis, to staging and the cancer arena, then to treatment,” he says.

He notes that the caregiver may also be called upon to do everything from managing tubes and drains to assistance with addressing surgical wounds.

On top of that, there are lots of issues involving insurance and medical paperwork.

Dr. Powers says one review found that while about 30 percent of patients met the criteria for being health insurance literate, it was about 50 percent for caregivers. The caregivers, he notes, often have to navigate lots of issues independently.

Dr. Seshamani points out the people who “fall through the cracks” are often those who are not well-versed in the healthcare system, who also may have lower English proficiency, which makes it difficult to fully understand the paperwork.

She says Medicare is trying to address health equity issues in proposed new regulations involving prior authorizations.

Those issues have been receiving increasing attention.

Dr. Seshamani also says regulations are in place to limit misleading marketing practices linked to open enrollment, as caregivers and their families seek out the best options.

A caregiver’s perspective

John Poole knows about all these issues firsthand.

He was about 30 years old, when both of his parents each suffered strokes within a month of each other.

He says it was “a very tense situation, as I’m sure all of you can imagine.”

Poole says in is experience there seemed to be very little clear communication involving healthcare and insurance representatives.

His parents had Medicare and a supplemental policy but the information he was given was at times confusing or inaccurate.

“I was not given the correct information on some things, which ended up costing them money out of pocket,” he says.

As one example, he notes as a result of her stroke, his mother had paralysis and was unable to swallow.

She needed to get nutrition and medicine through a tube, which had to be replaced every few months

“I was told by multiple people at Medicare and their supplemental insurance, that Medicare did not cover stretcher transport under any circumstances,” he says.

So the family ended up paying between $700 to $800 each time his mother was transported.

It was only later that he found out the tube replacement could be paid for, along with stretcher transport. By then, the family had spent close to $5,000.

“During my time as a caregiver, I felt like I was being treated with a one size fits all approach,” he says.

Meanwhile, he was still trying to hold down his job, while navigating all the medical and bureaucratic challenges.

He says it was “very scary and intense,” especially as he began his caregiving journey.

“I feel like the healthcare system, and policymakers, often forget that there are many people, many younger people dealing with this,” he says.

Poole says he has no regrets about all of his efforts, even if at times overcoming the hurdles could be challenging.

Caregiving advocacy    

Nancy LeaMond, with AARP, notes that she has been what she calls a ‘serial’ caregiver, first helping her mother care for her father. After her father died, she was a caregiver for her mother.

More recently, she, her sons and paid caregivers all worked to care for her husband, who was diagnosed with ALS.

“And what struck me was how different each experience was,” noting that the support she needed in each case was “very, very different.”

She says about a decade ago at AARP, her organization started hearing more and more from its members about how important the caregiving issue had become.

AARP has developed a wide range of materials to help people.

LeaMond says AARP began its advocacy at the state level.

“And over the years, we’ve seen hundreds of bills passed in every state — red, blue purple — to help family caregivers with respite care, costs of care, home and community-based services…a range of things,” she says.

She says AARP and other advocacy groups are now beginning to see more action at the federal level, in Washington.

In 2017, Congress passed bipartisan legislation directing the Department of Health and Human Services to develop a national strategy on caregiving. It was signed into law in 2018.

Earlier this year, President Biden issued an executive order on the care economy.

“And what was so important about that is it really recognized the role of family caregivers for the first time and had some directives to the Department of Health and Human Services,” LeaMond says.

Looking forward 

Dr. Seshamani says at the federal level efforts are being made to clarify a lot of issues related to prior authorization and Medicare coverage.

“We want to make sure that people can get access to medically necessary equipment and get access to it in a way that is streamlined and is not creating a burden on people who are already burdened, like caregivers,” she says.

LeaMond says AARP is a strong proponent of proposals that would provide a caregiving tax credit for those who work and spend a lot of money out of pocket, as John Poole did.

There’s also a continuing push for expanded paid family leave and the ability to take time off of work for caregivers.

She points out that in Congress caregiving is a bipartisan issue.

“Because it doesn’t matter if you’re Republican or Democrat, if your parents are sick or someone in your family, you’re going to be involved in their care,” she says. “The challenge for advocacy groups like ours is to build on that empathy.”

LeaMond points out that AARP and the United Way have a pilot program in several cities in which people can call a 2-1-1 number for assistance.

“This is affecting everyone and doctors are hearing from their patients,” she says. “We’re hearing from our members and legislators are going to hear from the people who vote for them.”

LeaMond is glad to see all the attention caregiving is getting today.

“This is a kitchen table issue. It’s an emotional issue. It’s a healthcare issue. It’s an economic issue,” she says.

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