Out-of-Pocket Expenses for Long-Term Care by Dementia Status and Residential Setting among US Older Adults

Abstract

ObjectiveTo examine long-term care out-of-pocket payments by dementia status and residential setting. DesignCompare monthly out-of-pocket long-term care expenses paid to facilities and helpers, total monthly out-of-pocket long-term expenses and as a percentage of monthly income by dementia status and residential status (community, residential facility, and nursing home). Setting and ParticipantsUS Nationwide, 2019 National Health and Aging Trends Study (NHATS) respondents aged ≥70 years. MethodsWe analyzed respondent-level data from the nationally representative 2019 NHATS. Weighted descriptive statistics were calculated for long-term care payments by source and summarized by dementia status and the respondent's residential status. ResultsAmong 4505 respondents aged ≥70 years, 1750 (38.8%) had possible or probable dementia and 2755 (61.2%) had no dementia. The median monthly out-of-pocket long-term care expenses for persons with dementia was $1465 for those living in nursing homes, and $2925 for those living in other residential facilities, much higher than those with dementia living in the community ($260). Although these are similar to the median out-of-pocket payments for persons without dementia by setting, those with dementia were at greater risk of facing catastrophic out-of-pocket expenses for long-term care than those without dementia, with the 75th percentile value of out-of-pocket payment at $4566 among dementia adults living in non–nursing home residential care facilities, and $7500 for those in nursing homes, compared to $3694 and $3100 among those without dementia. At median, these expenses accounted for 100% of monthly income of respondents with dementia living in facilities. Conclusions and ImplicationsPersons with dementia living in facilities often face substantial financial burdens from high out-of-pocket long-term care expenses. Policies that provide sufficient financial assistance are needed to address long-term care–related financial burdens experienced by older adults and their families, especially for those with dementia.