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. 2025 May 10;65(6):gnaf092.
doi: 10.1093/geront/gnaf092.

Financial Toxicity in Dementia Caregiving: Sociodemographic Predictors in a U.S. Nationally Representative Survey

Danielle M Hart  1 , Brandon Leggins  1 , Clara Sanches  1 , Elan L Guterman  1 , Winston Chiong  1
Affiliations

Financial Toxicity in Dementia Caregiving: Sociodemographic Predictors in a U.S. Nationally Representative Survey

Danielle M Hart et al. Gerontologist. .

Abstract

Background and objectives: "Financial toxicity" describes the negative effects of medical expenses on financial security and health-related quality of life. Beyond dementia, financial toxicity is used to address the financial and health consequences of illness. Here, we utilize the COmprehensive Score for financial Toxicity (COST) to examine the experience of financial toxicity in dementia caregiving.

Research design and methods: We conducted a nationally representative survey of 317 dementia caregivers. Financial toxicity was defined as COST<26 and categorized as mild (COST ≥14 and <26), moderate (COST >0 and <14), or severe (COST = 0). Nested multivariable regression examined potential predictors of financial toxicity. Mediation analyses were performed to assess whether the influence of basic caregiver demographic predictors was mediated by care recipient clinical characteristics, caregiver socioeconomic demographics, or relational characteristics.

Results: 52.7% of dementia caregivers in the United States experience financial toxicity. Of those, 73.1% endure mild, 25.7% moderate, and 1.2% severe toxicity. 69.5% of Black, 54.1% of Hispanic, and 42.3% of White caregivers report financial toxicity, with prevalence significantly higher in Black caregivers compared to White caregivers (p = .017). Older caregiver age was associated with less financial toxicity (p = .024). Caregiver employment status mediated this effect, with retirement associated with less financial toxicity (p < .001) and unemployment associated with greater financial toxicity (p < .001).

Discussion and implications: Most dementia caregivers in the United States experience financial toxicity, with Black caregivers bearing the highest risk. Older caregiver age protects against financial toxicity, reflecting the relationship between age and employment status.

Keywords: Caregiver burden; Cognitive; Healthcare costs; Neurology.

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Conflict of interest statement

E.L.G. receives personal compensation from JAMA Neurology and stock from REMO Health, which are unrelated to the submitted work. We have no conflicts of interest to disclose.

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