Caring for Cancer Takes a Hidden Toll: Caregivers Report Far More Days of Mental Distress

Millions of Americans quietly hold the health care system together. They drive relatives to chemotherapy appointments, manage medication schedules, bathe spouses who can no longer manage alone, and absorb the emotional shockwaves of a cancer diagnosis that lands on an entire household. A new population-based analysis of federal survey data suggests that this invisible workforce is paying a measurable psychological price, and that people caring for cancer patients may be suffering in a distinctly different way from other caregivers.

The study, published in the journal Supportive Care in Cancer, drew on the Behavioral Risk Factor Surveillance System, or BRFSS, an enormous annual health survey coordinated by the Centers for Disease Control and Prevention. Researchers led by Jeanne M. Ward of the Indiana University School of Nursing, together with John R. Blosnich of the University of Southern California and Victoria Champion of Indiana University, pooled responses from 2022 and 2023 across 24 states and territories that administered the CDC’s optional caregiving module. The resulting sample was strikingly large: nearly 200,000 adults, including 157,539 people who reported no caregiving duties, 39,047 informal caregivers looking after someone with a condition other than cancer, and 3,078 informal caregivers of cancer patients.

The investigators asked two related questions. First, how often had respondents experienced poor mental health, defined as stress, depression, or problems with emotions, during the previous 30 days? Anyone reporting six or more bad mental health days in a month was classified as experiencing frequent mental distress, a validated threshold that has been shown to track closely with clinical measures of psychological suffering such as the Kessler 6 scale. Second, had a doctor ever told the respondent they had a depressive disorder, including major depression, dysthymia, or minor depression? The first outcome captures current, situational anguish; the second captures a historical clinical diagnosis.

Because caregivers differ from non-caregivers in many ways that could confound any simple comparison, the researchers built statistical models that adjusted for a long list of covariates: age, sex, race and ethnicity, marital status, education, employment, urban versus rural residence, U.S. region, survey year, whether the respondent had exercised in the past month, and whether they reported 14 or more days of poor physical health in the previous 30 days. Logistic regression then estimated the odds of each mental health outcome associated with each type of caregiver status, holding everything else constant.

The headline finding was unambiguous. After adjustment, informal cancer caregivers had 89 percent higher odds of frequent mental distress than non-caregivers, with an adjusted odds ratio of 1.89 and a 95 percent confidence interval of 1.58 to 2.26. Non-cancer caregivers also fared worse than non-caregivers, with 58 percent higher odds of frequent mental distress. When the researchers turned to lifetime depression diagnosis, the pattern shifted: non-cancer caregivers showed the stronger signal, with 44 percent higher odds of ever being diagnosed with a depressive disorder, while cancer caregivers showed 34 percent higher odds. In other words, cancer caregiving was more strongly linked to recent, ongoing distress, whereas non-cancer caregiving was more strongly linked to a lifetime history of diagnosed depression.

That asymmetry is the most scientifically intriguing part of the study. Frequent mental distress reflects how someone has felt in the last month; a lifetime depression diagnosis reflects something that may have happened decades ago. The authors suggest several possible explanations. The ongoing, situational stress of cancer caregiving, which often intensifies as a patient’s condition deteriorates, may be generating acute distress that has not yet crystallized into a formal diagnosis. Alternatively, cancer caregivers may face barriers to accessing mental health care, or their depression may go underdiagnosed because clinical attention is understandably focused on the patient. The data cannot distinguish between these possibilities, but the pattern is consistent with the Cancer Family Caregiving Experience Model, a conceptual framework that treats caregiving as a dynamic stress process in which primary stressors such as escalating care demands and secondary stressors such as financial strain and employment disruption accumulate over the trajectory of the illness.

The unadjusted comparisons painted a vivid sociodemographic portrait of who becomes a cancer caregiver. Compared with the general population, informal cancer caregivers were significantly more likely to be female, non-Hispanic White, aged 65 or older, married or partnered, college-educated, unemployed or out of the workforce, and living in rural areas. Most of these associations were weak to moderate in effect size, but the age difference was the strongest, with a Cramér’s V of 0.17. Cancer caregivers were also significantly more likely to report frequent mental distress even before any statistical adjustment. Non-cancer caregivers, by contrast, were more likely to report 14 or more poor physical health days per month and a lifetime depression diagnosis, hinting that the caregiving relationship can run in both directions: poor health may sometimes precede and even motivate the caregiving role.

The regression models also surfaced broader correlates of psychological suffering that extend well beyond caregiving. Women had 60 percent higher odds of frequent mental distress and roughly double the odds of a lifetime depression diagnosis compared with men. Reporting 14 or more poor physical health days was the single strongest predictor in the models, associated with nearly fivefold higher odds of frequent mental distress and nearly threefold higher odds of a depression diagnosis. Lack of exercise in the previous month was linked to modestly higher odds of both outcomes. Interestingly, people living in rural areas had lower odds of both frequent mental distress and depression diagnosis than urban residents, and respondents in the Northeast reported better mental health than those in the West, findings that the authors note warrant further investigation given regional differences in health care access and reporting.

The scale of the issue is set to grow. There are approximately 2.8 million informal caregivers of cancer patients in the United States, and that number is expected to rise alongside the more than two million new cancer diagnoses projected for 2026. Informal caregivers demonstrably improve patient outcomes, bolstering patients’ mental health and helping them cope with the adverse effects of treatment, yet their own psychological needs frequently go unmet. Prior studies have hinted that cancer caregivers’ mental health needs exceed those of the general population, but rigorous population-level comparisons have been scarce, and the field has lacked recent estimates, particularly after the disruptions of the COVID-19 pandemic. A related analysis of BRFSS data from 2015–2016 through 2021–2022 found that frequent mental distress has been rising among both caregivers and the population as a whole, a broader societal trend that forms the backdrop against which this new study should be read.

The authors are careful about the limits of their evidence. BRFSS relies on self-report, introducing recall and social desirability bias, and the survey’s mental distress measure is not specific to caregiving. The data are cross-sectional, so causation cannot be established; it is possible that people with pre-existing vulnerability to distress are more likely to take on caregiving roles. Not all states administered the caregiving module, some states had response rates as low as 31 percent, and the survey did not capture cancer type, stage, or caregiving intensity, all of which are known to shape caregiver burden. The depression question also lumps together minor and major depressive conditions. Still, the persistence of the disparities after extensive adjustment strengthens the case that informal caregiving itself contributes to psychological strain, and the authors call for future research on caregiving intensity, cancer type, and stress trajectories over time.

The practical implications are concrete. The researchers argue that oncology teams, along with palliative and hospice care services, should integrate mental health screening into routine patient visits, using the patient encounter as a doorway to reach the caregiver sitting in the waiting room. Interventions should target the full stress process: reducing primary stressors such as care demands, addressing secondary stressors like financial and scheduling challenges, and supporting caregivers’ coping and self-care. Anticipatory guidance, particularly as a patient’s condition worsens or approaches end of life, could help caregivers prepare for the emotional terrain ahead. With nearly 200,000 survey responses behind these numbers, the message to clinicians and policymakers is difficult to ignore: the people holding up the cancer care system need care themselves, and the moment to notice them is now, while their distress is still measured in days rather than diagnoses.

Subject of Research: Mental health outcomes of informal cancer caregivers compared with non-cancer caregivers and non-caregivers using BRFSS 2022–2023 data

Article Title: Poor mental health days and depressive disorders comparing non-caregivers, informal non-cancer caregivers, and informal caregivers of cancer patients: BRFSS 2022–23

Article References: Poor mental health days and depressive disorders comparing non-caregivers, informal non-cancer caregivers, and informal caregivers of cancer patients: BRFSS 2022–23. (n.d.). https://doi.org/10.1007/s00520-026-11337-y

Image Credits: AI Generated

DOI: 10.1007/s00520-026-11337-y

Keywords: informal caregiving, cancer caregivers, frequent mental distress, depression, BRFSS, mental health, caregiver burden, public health, oncology, supportive care, epidemiology, health disparities