The cost of informal caregiving for Americans with heart disease and stroke is projected to more than double over the next two decades, increasing from $61 billion in 2015 to $128 billion by 2035, according to a policy statement published April 9 in Circulation.
Despite the term “informal,” the statement authors noted the care provided by friends and family members is important and often complex. More than half of informal caregivers hold other jobs, but the uncompensated healthcare services often contribute to lost productivity at their professional workplace or lead caregivers to quit their jobs altogether.
In addition, caregivers and their families sometimes incur massive out-of-pocket costs to care—particularly for chronic conditions such as heart failure—putting their own financial future at risk.
“Informal caregivers are indispensable assets to our health care system and often play a significant role in the recovery and well-being of heart disease and stroke survivors,” American Heart Association (AHA) CEO Nancy Brown said in a press release. “By 2035, the number of Americans living with heart disease and stroke will rise to 131.2 million—45 percent of the total U.S. population. Understanding the escalating burden this will place on the family members and friends who care for these individuals is essential if we are to address this looming crisis.”
Lead author Sandra Dunbar, RN, PhD, of Emory University School of Nursing, and colleagues quantified the annual cost of caregiving by looking at a nationally representative sample of 16,731 respondents from the 2014 Health and Retirement Survey. They estimated the hours of informal care provided for individuals with cardiovascular disease and calculated how much it would cost to pay an average salary for a home health worker, with a 46 percent inflation to account for fringe benefits.
The study, which also broke down the costs of caregiving by age, sex and race/ethnicity, revealed the following predictions for 2035:
- Informal caregiving for patients with stroke will cost $66 billion, more than half of the total CVD projection of $128 billion.
- Blacks with CVD will be the most expensive to care for at the individual level, increasing from $7,200 per person in 2015 to $10,000 in 2035. According to the press release, this is because blacks tend to experience stroke earlier in life and are more likely to rely on family and friends for long-term care.
- Women will require $73 billion in care compared to $55 billion for men, because women usually live longer and experience CVD at a later age.
- Individuals age 80 and older will need $53 billion in care, the most of any group. The most burdensome group in 2015 was people age 65 to 79 ($24 billion).
Dunbar and colleagues proposed several solutions to decrease the projected escalation in caregiver burden. For one, they suggested following the recommendations from the “Families Caring for an Aging America” 2016 report, which includes developing ways within Medicare, Medicaid and Veterans Affairs to support informal caregivers and engage them more in healthcare delivery. Payment reform would be helpful to incentivize providers to properly engage the caregiving community, according to the report.
In addition, Dunbar et al. said investment in caregiving research and expanded, earlier access to palliative care for patients with heart failure could lighten the load on caregivers.
“With the U.S. population growing older, the need for caregivers will accelerate considerably in the next two decades,” Brown said. “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.”
Daniel joined TriMed’s Chicago editorial team in 2017 as a Cardiovascular Business writer. He previously worked as a writer for daily newspapers in North Dakota and Indiana.