Frequency and implications of coexistent manifestations of serious illness in older adults with dementia

In older adults, serious illness comprises three manifestations: dementia, activity of daily living (ADL) impairment, and other advanced medical conditions (AMC; e.g., end-stage renal disease). Little is known about how dementia and other manifestations of serious illness co-occur. We aim to describe the prevalence of persons with dementia (PWD) who are living with additional manifestations of serious illness, and the implications on healthcare utilization, Medicare costs, caregiving hours and out-of-pocket expenses.

In this cross-sectional study, we use data from the 2016 Health and Retirement Study (HRS) linked to Medicare fee-for-service claims. We limited inclusion to adults >65 years. Dementia was determined using validated methodology that incorporates functional and cognitive test scores from HRS. We classified PWD as having dementia alone, dementia and an AMC (irrespective of ADL impairment) or dementia and ADL impairment (without an AMC). Healthcare utilization and Medicare costs were measured in claims, caregiving hours and out-of-pocket expenses were self-reported.

Most PWD (67%) met criteria for another manifestation of serious illness (24% advanced medical condition, 44% ADL impairment). PWD and an AMC had the highest proportion of hospital use and the highest median total Medicare costs ($17,900 vs. $8962 dementia + ADL impairment vs. $4376 dementia alone). Mean total hours of caregiving per month were similar for PWD and an AMC and PWD and ADL impairment (142.9 and 141.9 h, respectively), while mean hours were much lower for PWD alone (47.7 h). Median out-of-pocket costs were highest for PWD and ADL impairment ($13,261) followed by PWD and an AMC ($10,837) and PWD alone ($7017).

PWD commonly face another manifestation of serious illness. Dementia and ADL impairment was associated with the highest costs for PWD and families while dementia and an AMC was associated with the highest costs for Medicare.