Abstract

For older adults with dementia and their care partners, accessing health care outside the home involves substantial time, direct and indirect costs, and other burdens. While prior studies have estimated days spent by these individuals in or out of hospitals and nursing homes, ambulatory care burdens are likely substantial yet poorly understand. Therefore, we characterized "health care contact days"-days spent receiving ambulatory or institutional care-in this population. We used 2019 Medicare Current Beneficiary Survey data linked to claims for community-dwelling, ≥65-year-old adults with dementia in Traditional Medicare. We measured contact days including ambulatory days (with an office visit, test, imaging, procedure, or treatment) and institutional days (spent in an emergency department, hospital, skilled nursing facility, or hospice facility). We described variation and patterns in contact days. Using multivariable Poisson regression, we identified sociodemographic and clinical factors associated with contact days. In weighted analyses, 887 older adults with dementia (weighted: 2.9 million) had mean (SD) 31.1 (33.7) total contact days/year, of which 21.7 (20.6) were ambulatory. Ten percent had ≥68 contact days in the year. One-third (34%) of ambulatory contact days involved multiple services. In multivariable models, receipt of more ambulatory contact days was associated with younger age (65-74 reference vs. -32.3% [95% CI: -42.2%, -20.7%] for 85+), higher income (>200% Federal Poverty Level [FPL] reference versus -16.6% [95% CI: -26.7%, -5.0%] for ≤200% FPL), and lack of functional impairment (reference versus -14.6% [95% CI: -23.7%, -4.4%]). Each additional chronic condition was associated with 8.2% (95% CI: 6.7%, 9.8%) more ambulatory contact days. Older adults with dementia spent 31 days a year accessing care which was mostly ambulatory. These days varied widely by both clinical and sociodemographic factors. These results highlight the need to reduce patient burden through strategies such as reducing unneeded care, coordinating care, and shifting care to home settings through telemedicine and home care.

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