Importance: Estimating the effects of dementia on care use and financial outcomes is timely, as the population with dementia will more than double in the next few decades.
Objective: To determine the incremental changes associated with dementia in regard to older adults' care use and assess financial consequences for individuals, families, and society.
Design, setting, and participants: This population-based cohort study included propensity score matching on national, longitudinal data using extensive baseline variables of sociodemographic characteristics, economic status, family availability, health conditions, disability status, and outpatient care use among 2 groups of US adults aged 55 years or older who did not have dementia. In total, 2387 adults experienced the onset of dementia during the 2-year follow-up (dementia group) and 2387 adults did not (control group). Participants were followed up for 8 years from the baseline. Data were analyzed from February 2021 to August 2023.
Exposure: Dementia determined based on Langa-Weir classification.
Main outcomes and measures: Outcomes of care use included monthly care hours from family and unpaid helpers, in-home medical services, hospital stay, and nursing facility stay. Financial outcomes included out-of-pocket medical costs, wealth, and the status of having Medicaid.
Results: Among the full sample, the mean (SD) age was 75.4 [10.4] years, and 59.7% of participants were female. Care use was similar at baseline between the matched groups but was substantially greater for the dementia group vs control group in subsequent years, especially during the 2-year follow-up: 45 vs 13 monthly care hours from family and unpaid helpers, 548 of 2370 participants (23.1%) vs 342 of 2383 (14.4%) using in-home medical care, 1104 of 2369 (46.6%) vs 821 of 2377 (34.5%) with hospital stay, and 489 of 2375 (20.6%) vs 104 of 2384 (4.4%) using a nursing facility. The increase in use of a nursing facility was especially high if baseline family care availability was low. Over the 8-year follow-up in the dementia group, the 2-year out-of-pocket medical costs increased from $4005 to $10 006, median wealth was reduced from $79 339 to $30 490, and those enrolling in Medicaid increased from 379 of 2358 participants (16.1%) to 201 of 676 participants (29.7%). No statistically significant changes in financial outcomes were found in the control group.
Conclusion and relevance: This cohort study demonstrated that the incremental changes associated with dementia in regard to older adults' long-term care and financial burden are substantial. Family care availability should be accounted for in a comprehensive assessment of predicting the effects of dementia.