Financial toxicity in dementia caregiving

Abstract

AbstractBackgroundDementia caregiving is associated with significant financial costs. The term “financial toxicity” has been used in many care settings to describe the negative effects of medical expenses on both financial security and health‐related quality of life. Here, we utilize the validated COmprehensive Score for financial Toxicity (COST) to examine the experience of financial toxicity in American dementia caregiving.MethodWe conducted a nationally representative survey of 317 US dementia caregivers, oversampling non‐Hispanic Black (n = 75) and Hispanic (n = 61) caregivers, with the COST questionnaire. Financial toxicity was defined as COST <26 and further categorized as mild (COST ≥14 & <26), moderate (COST >0 & <14), or severe (COST = 0) according to the measure’s predetermined cut points. COST was treated categorically to generate descriptive statistics and continuously for linear regression. We built nested multivariable models to use in our regression‐based analysis. The base model included key caregiver demographics (age, gender, race/ethnicity, rurality), to which the fully adjusted model added supplementary caregiver demographics, care recipient clinical characteristics, and caregiver‐recipient relational characteristics.ResultSurvey‐weighted categorical analysis revealed 52.7% of American caregivers experience some degree of financial toxicity. Of those who experience financial toxicity, 73.1% are classified as mild, 25.7% as moderate, and 1.2% as severe. Financial toxicity was identified in 69.5% of non‐Hispanic Black, 54.1% of Hispanic, and 42.3% of non‐Hispanic White caregivers, with non‐Hispanic Black caregivers significantly more likely to experience financial toxicity compared to non‐Hispanic White caregivers (p = 0.017). In our base linear regression model, older caregiver age was protective against financial toxicity (p = 0.024). Caregiver employment status mediated this effect in the fully adjusted model, with retirement protective against financial toxicity (p <0.001). In contrast, unemployment predisposed caregivers to financial toxicity (p <0.001).ConclusionMost dementia caregivers in the US experience financial toxicity, with Non‐Hispanic Black caregivers bearing the highest risk. Older caregiver age protects against financial toxicity, likely due to the relationship between age and retirement.