Cost of informal dementia care by US state, 2010‐2019

Abstract

AbstractBackgroundThere are significant costs associated with dementia care throughout the world. These are expected to rise as populations age. Informal (unpaid) care represents a large fraction of these costs, although it is challenging to measure. In the United States, estimates of the cost of informal dementia care are dated and measured only at the national level. To fill this gap, we estimated the cost of informal care attributable to dementia through 2019 for each US state.MethodThe value of informal care is estimated as the replacement cost (cost of an equivalent number of hours of paid care) and opportunity cost (expected cost of forgone wages of the caregivers). We combine data from the Behavioral Risk Factor Surveillance System, the National Health and Aging Trends Study (NHATS), and the Health and Retirement Study to estimate caregiving hours at the state level from 2010‐2019. NHATS data are used to estimate the fraction of caregiving hours attributable to dementia.ResultIn 2019, the average annual per‐patient cost of informal care attributable to dementia was $42,271 ($37,338‐$47,898) using the replacement cost method and $19,769 ($15,711‐$25,029) using the opportunity cost method. These estimates imply a national cost of $207.2B ($183.1B‐$234.8B) or $96.9B ($77.0B‐$122.7B) per year, respectively. State‐level estimates show significant variation in informal caregiving hours per prevalent case of dementia. In 2019, the annual replacement cost of informal care provided per patient ranged from $15,885 ($13,941 ‐$17,979) in Nebraska to $71,438 ($63,155 ‐$80,316) in New Mexico. The opportunity cost had a larger spread in relative terms, ranging from $6,653 ($5,233‐$8,417) in Nebraska to $36,831 ($29,071‐$46,833) in Missouri. Co‐occurrence of diabetes mellitus prevalence is associated with more informal care hours for the average adult living with dementia, while average years of education of the caregiver is associated with fewer informal care hours.ConclusionThe hours spent on informal care per prevalent case of dementia vary dramatically by state. This work adds to our understanding of health and demographic factors that are associated with hours of informal care, which can help policymakers plan for future increases in dementia prevalence and assess policy to support caregivers.