By AMERICAN HEART ASSOCIATION NEWS

The “informal” costs of caregiving for Americans with heart disease and stroke are projected to more than double by 2035, according to a new analysis.

Informal caregiving is a broad term, typically involving family, friends and others caring for patients outside the formal health care system who are not paid for that care.

The cost of this type of care is expected to increase from $61 billion in 2015 to $128 billion by 2035, according to data in a policy statement published Monday in the American Heart Association journal Circulation. The figure boosts the AHA estimate of total cardiovascular disease costs to about $1.2 trillion annually by 2035 – when about 45 percent of the population is projected to have some type of cardiovascular disease.

“While we often acknowledge the financial cost of cardiovascular disease, including hospitalization and medications, we tend to overlook the significant burden that informal caregivers experience,” said Sandra Dunbar of Emory University School of Nursing and chair of the expert group that wrote the policy statement.

The data, which aimed to provide a more comprehensive representation of cardiovascular disease costs, follows recent research about informal caregivers in general.

A 2017 study from the Coalition to Transform Advanced Care found they endure significant stress, including an inability to work and financial problems. More than half hold jobs while providing care, according to the report.

Those caring for spouses spent, on average, 37 percent of their annual income on caregiving, a 2016 report from AARP found. They spent an average of $7,000 a year in out-of-pocket costs for home modifications, transportation, reduced worktime, unpaid leave and reduced savings, researchers said.

The impact at home

Timothy and Louise Crain of Monroe, Washington, are painfully aware of the financial toll.

Louise has struggled over the years with severe hypertension, multiple sclerosis and several other health issues, and two years ago she had a stroke. Timothy has never hesitated at being her caregiver.

“It’s a responsibility that I made when we got married, and it will continue to be that way,” he said. “It’s something that I want and need to do for her.”

There have been financial sacrifices, and Timothy had to take a three-month leave of absence from his job, with the support of his employer.

Employer support is crucial for caregivers, but problems sometimes arise over time, Dunbar said. Employees who can’t work to capacity because of their caregiving eventually feel pressured to reduce their hours or resign, she said.

That’s what happened to Kimarie Hugus of Casper, Wyoming.

Her 11-year-old son, Ezekiel, was born with congenital heart defects. He was born with a single ventricle in his heart and dextrocardia, meaning his heart is on the opposite side of his chest.

Kimarie Hugus with, from left, her son Corbin, husband Ryan and son Ezekiel. (Photo courtesy of Kimarie Hugus)

Kimarie Hugus with, from left, her son Corbin, husband Ryan and son Ezekiel. (Photo courtesy of Kimarie Hugus)

The family must make frequent 500-mile round trips to a cardiology specialist in Colorado.

Eventually Hugus began to feel leery about asking for frequent time off. While her employer seemed supportive, she knew there was a desire for someone working more consistent, regular hours.

She stopped working to care for Ezekiel full-time, but without an income the bills can feel even more overwhelming.

“We totaled it up a few years ago and it cost over $3 million for Ezekiel’s care,” she said.

More strains on caregivers

Over time, caregiving can take a toll emotionally.

An estimated 40 to 70 percent of caregivers have clinically significant symptoms of depression, with one-quarter to half meeting the diagnostic criteria for major depression, according to the Family Caregiver Alliance.

Ashley McGarrah with her son Jaxon at last year’s Rally for Medical Research on Capitol Hill. (Photo courtesy of Ashley McGarrah)

Ashley McGarrah with her son Jaxon at last year’s Rally for Medical Research on Capitol Hill. (Photo courtesy of Ashley McGarrah)

Ashley McGarrah, whose 4-year-old son Jaxon suffers from congenital heart disease, says people often underestimate that impact.

“It’s not a normal job. We don’t get to go home at 5 p.m. or take a sick day,” she said. “We carry the burden of worrying about our child, and we carry the burden of making sure that both physically and emotionally our children are being taken of. We do it because we care.”

Recommendations

Despite efforts in recent years to mitigate caregivers’ challenges, in general the United States does not have an acceptable framework for how caregiving is viewed, Dunbar said.

Authors of the policy statement recommended four steps for policy officials, lawmakers and health care leaders:

  • Develop and deploy a national caregiving strategy.
  • Expand palliative care access.
  • Embed caregiver engagement and outcomes in performance and payment reforms.
  • Invest more in caregiving support and research.

“With the U.S. population growing older, the need for caregivers will accelerate considerably in the next two decades,” said AHA CEO Nancy Brown. “We have no time to waste, if we are to minimize the burden that will be placed on these Americans and their loved ones and wipe out the devastating economic and health impact of heart disease and stroke.”

If you have questions or comments about this story, please email editor@heart.org.