Nursing home residents with advanced dementia commonly receive aggressive care near the end-of-life that can be burdensome and of questionable clinical benefit. However, the expenditures associated with caring for these residents have never been described and the factors influencing those expenditures are not known. The Choices, Attitudes, and Strategies for Care of Advanced Dementia at the End-of-Life (CASCADE) study was an NIH-funded prospective cohort study conducted between 2003-2009. The CASCADE study yielded a very rich dataset rigorously detailing the course of a well-defined cohort of NH residents with advanced dementia and the experience of their family members followed for up to 18 months. In this R21 application, we propose to leverage the unique CASCADE dataset by linking it to Medicare and Medicaid claims files in order to describe and examine factors associated with the expenditures on care for NH residents with advanced dementia. This will be the first study of health care expenditures in this population. The following specific aims are proposed:
Aim 1. To describe the Medicare and Medicaid expenditures on care for 317 NH residents with advanced dementia living in 22 Boston area facilities between 2003 and 2009. The analyses will identify the sources of spending variation, and examine factors associated with higher expenditures in these residents.
Aim 2. To describe the Medicare and Medicaid expenditures on care for 258 decedents with advanced dementia from the CASCADE cohort across intervals prior to death (0-3 months, 3-6 months, 6-9 months, 9-12 months). Impact: Linking Medicare and Medicaid claims to an established, clinically rich dataset of a rigorously defined cohort of 317 NH residents with advanced dementia provides a unique opportunity to describe expenditures for treating this condition and examine factors associated with these expenditures. In addition, this exploratory work will provide preliminary data and the foundation for an NIH R01 grant application that will aim to use linked national datasets to study health care spending on advanced dementia on a larger scale. Taken together, the proposed work represents the first step towards planning services and policies that promote end-of-life care in advanced dementia that is of high quality, consistent with patient preferences, and cost-effective.

Public Health Relevance

There has been much interest among policymakers in the costs of caring for nursing home patients with advanced dementia. By linking administrative claims data with unique clinical information collected from advanced dementia patients and their families, this study provides an opportunity to improve the efficiency of care for the millions of Americans that receive dementia care in the nursing home setting.

National Institute of Health (NIH)
National Institute on Aging (NIA)
Exploratory/Developmental Grants (R21)
Project #
Application #
Study Section
Special Emphasis Panel (ZRG1-HDM-R (02))
Program Officer
Baker, Colin S
Project Start
Project End
Budget Start
Budget End
Support Year
Fiscal Year
Total Cost
Indirect Cost
Hebrew Rehabilitation Center for Aged
United States
Zip Code
Goldfeld, Keith S; Grabowski, David C; Caudry, Daryl J et al. (2013) Health insurance status and the care of nursing home residents with advanced dementia. JAMA Intern Med 173:2047-53