Cancer is a disease of ripples – from symptoms that precede a diagnosis to treatment, side effects, and goals for long-term survival. It can impact every facet of life, for the person who receives the diagnosis as well as the person who is their caregiver.
For caregivers, the economic impacts of cancer can be particularly acute, not just because cancer is an expensive disease, but because their ability to work may be significantly impacted.
Building on an extensive foundation of previous research studying employment and outcomes related to cancer, newly published research led by Cathy Bradley, PhD, MPA, deputy director of the University of Colorado Cancer Center, finds that cancer caregivers from lower-income households are more likely to increase debt and experience work loss compared with non-cancer caregivers in similar households.
“Employed caregivers can be really set back by this diagnosis, especially because the caregiving work is unpaid,” Bradley explains. “Not only is it unpaid, but they are being financially penalized for caring for their loved one. If they were not in the picture, someone else would have to pick up that role – maybe the person with cancer would have to be in a nursing home or some other sort of facility, and someone would have to pay for that. Caregivers are shouldering a huge social burden.”
Economic impacts of a cancer diagnosis
In the United States, approximately 6 million people provide caregiving for people diagnosed with cancer. Many among that number, including those earning $75,000 or less annually, continue working while also caregiving for a variety of reasons, including a need for the income and/or the health benefits.
Drawing data from the national Health and Retirement Study, Bradley and her co-researchers initially noted that the economic impacts on all cancer caregivers existed but were not huge. However, once they stratified the data by income levels, “that’s where we saw a big divergence,” Bradley says. “We know that people who are above that $75,000 income often have resources or savings that can get them through.”
In studying 103 employed cancer caregivers ages 50 to 65 who were caring for a spouse diagnosed with cancer, and comparing them with a matched control group caring for a spouse with other conditions, some stark findings emerged: 35% of cancer caregivers reported they stopped working and 30% of cancer caregivers had an increase in household debt.
Policies to support caregivers
“The problems can just start compounding,” Bradley explains. “People making less than $75,000 a year are more likely to lose their jobs in the absence of paid sick leave. If someone is earning $75,000 by working two jobs, they may not have benefits at either job, so low-income wage earners just don’t have a leg up to be able to survive a caregiving episode.
“They’re employed people who otherwise take care of themselves, but they don’t have the luxury to be sick or to have family members get sick. That can lead to an additional stress burden where not only can you not get sick or do anything that will take you from your job, but you can’t stop working, you can’t get laid off, and you have to balance that with the demands of caregiving, which can be significant.”
Also, even with insurance, cancer is expensive. Any changes in employment status may affect how household expenses are allocated, whether a family can afford dietary adaptations, whether and for how long rehabilitation is economically feasible, and many other aspects of daily life.
For cancer caregivers who are older than 50, debt incurred during the period of caregiving may lead to having to work well beyond average retirement age, often with little if any economic cushion. They remaining in the position of needing to never get sick themselves, never have a car break down, never break a tooth, or have anything else go wrong that might drain money they don’t have, Bradley says.
“Until we pass policies that guarantee paid sick leave – and there’s study after study showing paid sick leave pays for itself, besides being beneficial for the health and well-being of the workforce – we are going to continue penalizing people for caring for their loved ones,” Bradley says. “Caregivers should not be punished for doing the work of caregiving.”