In a new analysis released today, the American Heart Association projects that the cost of informal caregiving for Americans with heart disease and stroke will more than double from $61 billion in 2015 to $128 billion by 2035. These new data on caregiving would increase the association’s predicted 2035 price tag for cardiovascular disease (CVD) total costs to $1.2 trillion annually. The study was included in a policy statement, published in the association’s journal, Circulation.

“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,” said American Heart Association CEO Nancy Brown. “By 2035, the number of Americans living with heart disease and stroke will rise to 131.2 million—45% of the total US 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.”

The analysis utilized data from the 2014 Health and Retirement Survey to estimate hours of “informal” caregiving for individuals with CVD by age, sex, and race. It examined a nationally representative sample of 16,731 respondents, age 54 and older. Informal caregiving is defined as the home care provided by family members or friends for loved ones with no compensation. Researchers determined the dollar value of informal caregiving by using the 2015 median wage for home health workers and increasing it by 46% to account for fringe benefits.

The study predicts that by 2035, caregiving costs for:

•patients with stroke will be $66 billion, accounting for half of the total cost of $128 billion
•African Americans, who often experience stroke earlier and rely more on family/friends for long-term care, will be the highest at the individual level, rising from $7,200 in 2015 to $10,000 in 2035
•White non-Hispanic CVD patients will be the greatest at $70 billion, increasing from $37.7 billion in 2015 because they are the largest segment of the population
•individuals age 80 and over will increase to $53 billion, surpassing 2015 caregiving costs at $24 billion for those age 65 to 79
•women with CVD will be higher—$73 billion—than for men—$55 billion, because women usually live longer and experience CVD at a later age.

“The dramatic rise in the prevalence of cardiovascular disease in the next two decades will place an intense strain on caregivers, putting their own health at risk from the ongoing distress, physical demands, and costs,” said lead author Sandra Dunbar, RN, PhD, FAHA, of Emory University School of Nursing. “Our nation will ultimately bear the financial impact of this situation, especially as the caregiver pool shrinks.”

To address the rising expense of caregiving and provide necessary education and support on a national level to caregivers, the association recommends that policy officials, lawmakers, and health-care leaders take 5 steps:

1. Move forward with the recommendations made by the National Academies of Sciences, Engineering, and Medicine in their 2016 report, “Families Caring for an Aging America,” which includes:

•Developing mechanisms within Medicare, Medicaid, and Veterans Affairs to support informal caregivers;
•Establishing payment reforms that motivate providers to engage caregivers in health-care delivery and federal policies that provide economic support for caregivers;
•Reviewing state initiatives that address caregiver needs.

2. Make palliative care available for advanced cardiovascular disease patients sooner by expanding access in all hospital and community-based settings.

3. Embed caregiver engagement and outcomes in performance and payment reforms.

4. Invest more in caregiving research and focus on priority areas, such as health-care delivery reforms that would preserve the well-being and productivity of caregivers and examine ways to enhance caregiver support and education.

5. Implement the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act, which the association strongly supports.The act provides a framework for public and private sector stakeholders to develop and execute a national caregiving strategic action plan.

“With the US population growing older, the need for caregivers will accelerate considerably in the next two decades,” warned 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.”