Double Danger: Additive Effects of Dementia and Additional Serious Illness on Patient, Caregiver, and Health System Outcomes

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RP1 Project Summary: Background: Healthcare spending is highly concentrated among a small seriously ill population and, despite high spending, quality of care for this group is often low, marked by poor communication, high burden of pain and other symptoms, and preference-discordant treatments. A key subset of this seriously ill population, persons with dementia (PWD), may experience the greatest burden of serious illness due to dementia’s long course of illness, progressive functional impairment, and high degree of caregiver strain, the impact of which is often magnified among vulnerable and underserved subgroups. These issues are not well characterized over the course of illness and very little is known about the experience of those with both dementia and another coexistent serious illness, such as advanced cancer or heart failure. Aims: This project aims to contribute rich, prospective patient-centered evidence examining the longitudinal experience of PWD and another coexistent serious illness and their families with additional focus on disparities in outcomes among socially vulnerable and underserved populations. We will: 1) examine among PWD the prevalence of another coexistent serious illness over time until death; 2) evaluate differences in treatment intensity (i.e., total Medicare costs, total hospital days, days away from home) annually and cumulatively until death, among person with dementia alone and those with dementia and another serious illness; and 3) assess differences in patient and family experience of care (i.e., caregiving hours, caregiver strain, care-setting transitions, nursing home admission and in-hospital death), among persons with dementia alone and those with dementia and another serious illness. In each aim, we will study differences across vulnerable subgroups. Methods: We will assemble a novel, prospectively-framed sample of PWD combining the nationally- representative Health and Retirement Study (HRS) and National Health and Aging Trends Study (NHATS) cohorts and follow them through the full course of dementia until death. Using currently available data, we will capture over 7000 individuals at the interview when probable dementia was first identified, and combine their longitudinal survey data with Medicare claims data through time of death, to investigate differences in treatment intensity and experience of care between those with dementia alone and those with dementia and another serious illness (e.g., advanced heart failure). Public Health Significance: Older adults with dementia and another coexistent serious illnesses and their families are at risk for suffering due to low-quality, high-cost care, yet little prospective data on their experiences exist. This project will examine the longitudinal experience of PWD and their families beginning when dementia was first identified, and compare these experiences to those with another serious illness, such as advanced cancer or heart failure. By examining patient and families’ experiences prospectively and over the full course of illness, we can begin to appropriately target the interventions needed to improve care.