A bill to strengthen support for family caregivers is working its way through Congress. If enacted, it would create tax credits to help offset the financial burdens of caring for the seriously ill.
Two U.S. Senators recently reintroduced the Credit for Caring Act, first proposed in 2021. The bill would establish a tax credit up to $5,000 for eligible, working family caregivers. The sponsors of the Senate bill included Sens. Shelley Moore Capito (R-West Virginia) and Michael Bennet (D-Colorado). Meanwhile, U.S. Reps. Linda Sánchez (D-California) and Mike Carey (R-Ohio) introduced a similar bill in the House.
“As someone who helped care for both of my parents as they battled Alzheimer’s at the end of their lives, I understand the emotional and physical toll it can take on individuals and families,” Capito said in a statement. “The Credit for Caring Act is a great tool to help to ease the financial burden caregivers face and I am proud to join with my colleagues today in reintroducing this bill. By passing this bill, we can help caregivers focus more on their loved ones and less on how much it will cost them.”
The proposed tax credits would apply to incurred family caregiving expenses greater than $2,000.
The nation’s health care system is lacking in support for caregivers of the terminally ill, who are often left with a heavy financial and logistical burden. Without assistance or relief, these difficulties can impede access to hospice and other types of home-based care.
Research has shown that patients who are faced with end-of-life decisions may be less likely to choose hospice unless they have a network of friends or family who can serve as home caregivers. Even when a caregiver is present, that person may be elderly or ill themselves, or unable to be in the home around the clock due to work or other obligations.
The expense alone can be a struggle for the 48 million unpaid family caregivers in the United States.
Roughly three-quarters of them spend upwards of $7,200 annually for costs related to caring for loved ones, AARP reported. For many caregivers, this amounts to 26% of their income, according to AARP. These costs can include patient medical and non-medical needs or lost income due to missed work days. Around 30% of caregivers cover rent or mortgage payments for their loved ones, while 17% pay for medical costs, AARP indicated.
While the financial costs are measurable, the emotional and physical toll of caregiving is substantial but difficult to quantify. For most families, caregiving comes with an onslaught of constant stress, essentially living in “fight-or-flight mode,” according to Jessica Kim, co-founder of the care navigation and caregiver support company ianacare.
“In intense caregiving situations, you never get that moment of rest. Anything can happen any second, and you have to constantly react,” Kim told Hospice News. “That takes a complete toll on the caregiver’s health. You can’t sleep through the night; you’re constantly on alert. Especially if you’re working or have kids, all caregivers have other aspects of their own life that always have to be on hold or dropped at any moment.”
Kim is speaking from first hand experience, having cared for both of her parents in their final years and months of life while working and raising three children. Her mother’s terminal bout with pancreatic cancer lasted for seven-and-a-half years. Her father passed away due to congestive heart failure last August.
The financial burden on caregivers is associated with a range of negative outcomes, according to a 2020 BMC Palliative Care study. These outcomes are particularly damaging for families who are “systematically disadvantaged financially,” leading to inequities in access and utilization of palliative and hospice care.
In addition to lost dollars, caregiving comes with an emotional and physical cost. Caregivers often see their own health decline. This is exacerbated when the caregiver is elderly or chronically ill themselves. Nearly 20% of unpaid caregivers are elderly, frail, or suffer from a chronic health condition, according to the U.S. Centers for Disease Control & Prevention (CDC).
The Credit for Caring Act has a long, potentially tumultuous road ahead in Congress when lawmakers are working through a range of competing priorities, including a forthcoming election. However, if the bill becomes law, it could have a significant impact on caregivers, according to Kim.
“If [the bill] really goes through — because there are many years where we talk about it, and it gets so close — the biggest thing is the recognition on a national level in a very practical way to say that we know that this is happening, and we’re putting a budget behind it,” Kim said. “So I think that will make a huge difference.”