Characterizing Financial Strain Among Informal Cancer Caregivers: Results from the 2020 Caregiving in America Survey

Background and Purpose: An estimated 53 million adults in the United States are informal caregivers, accounting for 21.3% of the population. Informal caregivers play critical roles for effective illness management and demands for informal care are expected to grow substantially due to the aging population and increasing prevalence of chronic illnesses. In the context of cancer, caregivers dedicate more time to caring responsibilities, sustain greater out-of-pocket costs, and face more rapidly changing conditions. Despite growing recognition of the personal financial burden, or “financial toxicity,” that cancer patients sustain, few studies have examined financial toxicity among informal caregivers. Extant literature indicates that informal cancer caregivers face considerable costs and loss of productivity due to time away from work and usual activities, with variation by sociodemographic and clinical characteristics. Caregivers also experience psychological distress and delays in their own medical care. Therefore, improving understanding of financial toxicity experienced by this group is critical to inform timely and comprehensive screening and interventions. This study characterizes and compares financial toxicity among the four largest groups of caregivers from the 2020 Caregiving in America Survey; namely, informal caregivers for cancer, dementia, mobility, and aging. Additionally, factors contributing to greater self-reported financial strain were investigated.

Methods: This secondary data analysis was conducted on a subset of 1,337 informal caregivers, selected by relevant conditions. Respondents answered questions about sociodemographic factors (age, gender, race, and income), caregiving characteristics, and items addressing physical health, mental health status, and impact of caregiving on overall health. Financial strain was measured on a 5-point Likert Scale, from “not a strain at all” (1) to “very much a strain” (5). Group mean differences and stepwise regression analyses were conducted using SPSS version 28.

Results: Participants were mostly women, middle-aged (mean= 55.4, SD= 16.04), and non-Hispanic White (59.2%). Approximately 23% of cancer caregivers experienced financial strain, whereas 18% of mobility issues caregivers, 15% of Alzheimer’s Disease/Dementia caregivers, and 10% of caregivers for aging individuals agreed that caregiving tasks had financial impact (F _{(3, 1325)} = 10.28, p<.001). Among cancer caregivers (F _{(5, 215)} =14.75, p <.001), those with higher levels of financial strain were more likely to be younger (β = -.175, p <.01), with higher levels of emotional stress (β = .233, p =.001), income decline (β = -.129, p <.05), greater physical burden (β = .207, p < .05), and decreased personal health (β = -.127, p < .05).

Conclusions and Implications: Informal caregivers for patients with cancer experienced financial toxicity more than those caring for patients with dementia, mobility, and the aging group. Vulnerability to financial strain may be due to sociodemographic characteristics, such as younger age, or factors associated with the demands of caregiving (psychological and physical distress, health status, income decline). Findings underscore the need for multilevel and multidimensional interventions to address financial strain among informal caregivers. Recognizing, screening for, and addressing financial hardship among cancer survivors and their informal support systems are foundational competencies for which social workers and other professionals should receive training and improve skills.