Objective:

Estimate the prevalence of financial toxicity in dementia caregiving and assess its sociodemographic correlates.

Background:

Dementia caregiving is associated with significant financial costs, contributing to caregiver burden. The term “financial toxicity” has been used in a variety of care settings to describe the negative effects of medical expenses on both financial security and health-related quality of life. In this study we utilize the validated COmprehensive Score for financial Toxicity (COST) to examine the experience of financial toxicity in dementia caregiving.

Design/Methods:

We conducted a nationally representative survey of 317 US dementia caregivers, oversampling non-Hispanic Black (n = 75) and Hispanic (n = 61) caregivers, including the COST questionnaire. Based on prior literature, 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.

Results:

COST scores ranged between 0 and 44, with a survey-weighted mean of 24.57 and standard deviation of 9.8. Weighted 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 their non-Hispanic White counterparts (p = 0.017).

Conclusions:

Most dementia caregivers in the US experience financial toxicity. Our findings indicate racial differences in the experience of financial toxicity among American dementia caregivers.