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The Burden of Health Care Costs for Patients With Dementia in the Last 5 Years of LifeBurden of Health Care Costs for Patients With Dementia

Amy S. Kelley, MD, MSHS; Kathleen McGarry, PhD; Rebecca Gorges, MA; and Jonathan S. Skinner, PhD
[+] Article, Author, and Disclosure Information

This article was published online first at www.annals.org on 27 October 2015.


From Icahn School of Medicine at Mount Sinai, New York, New York; University of California, Los Angeles, Los Angeles, California; and Dartmouth College, Hanover, New Hampshire.

Grant Support: Dr. Kelley receives support from the National Institute on Aging (NIA) (grant K23-AG040774) and the American Federation for Aging Research. Dr. Skinner is supported by the NIA (grants PO1-AG19783 and U01-AG046830). The HRS (Health and Retirement Study) is funded by the NIA (U01 AG009740) and the Social Security Administration and is performed at the Institute for Social Research, University of Michigan.

Disclosures: Dr. Skinner received a grant from the NIA during the conduct of the study and has invested in Dorsata, which is a startup software company developing physician decision-support programs. Authors not named here have disclosed no conflicts of interest. Forms can be viewed at www.acponline.org/authors/icmje/ConflictOfInterestForms.do?msNum=M15-0381.

Editors' Disclosures: Christine Laine, MD, MPH, Editor in Chief, reports that she has no financial relationships or interests to disclose. Darren B. Taichman, MD, PhD, Executive Deputy Editor, reports that he has no financial relationships or interests to disclose. Cynthia D. Mulrow, MD, MSc, Senior Deputy Editor, reports that she has no relationships or interests to disclose. Deborah Cotton, MD, MPH, Deputy Editor, reports that she has no financial relationships or interest to disclose. Jaya K. Rao, MD, MHS, Deputy Editor, reports that she has stock holdings/options in Eli Lilly and Pfizer. Sankey V. Williams, MD, Deputy Editor, reports that he has no financial relationships or interests to disclose. Catharine B. Stack, PhD, MS, Deputy Editor for Statistics, reports that she has stock holdings in Pfizer.

Reproducible Research Statement:Study protocol: Not available. Statistical code: Available from Dr. Kelley (e-mail, amy.kelley@mssm.edu). Data set: Available only by application for restricted data use from the HRS (http://hrsonline.isr.umich.edu/index.php?p=resdat) and Centers for Medicare & Medicaid Services (http://hrsonline.isr.umich.edu/index.php?p=medicare).

Requests for Single Reprints: Amy S. Kelley, MD, MSHS, Department of Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai, 1 Gustave L. Levy Place, Box 1070, New York, NY 10029; e-mail, amy.kelley@mssm.edu.

Current Author Addresses: Dr. Kelley and Ms. Gorges: Department of Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai, 1 Gustave L. Levy Place, Box 1070, New York, NY 10029.

Dr. McGarry: Department of Economics, University of California, Los Angeles, 8283 Bunche Hall, Box 951477, Los Angeles, CA 90095.

Dr. Skinner: Department of Economics, Dartmouth College, 6106 Rockefeller Hall, Hanover, NH 03755.

Author Contributions: Conception and design: A.S. Kelley, K. McGarry, J.S. Skinner.

Analysis and interpretation of the data: A.S. Kelley, K. McGarry, R. Gorges, J.S. Skinner.

Drafting of the article: A.S. Kelley, K. McGarry.

Critical revision of the article for important intellectual content: A.S. Kelley, K. McGarry, J.S. Skinner.

Final approval of the article: A.S. Kelley, K. McGarry, J.S. Skinner.

Provision of study materials or patients: A.S. Kelley.

Statistical expertise: K. McGarry, J.S. Skinner.

Obtaining of funding: A.S. Kelley.

Administrative, technical, or logistic support: A.S. Kelley, J.S. Skinner.

Collection and assembly of data: A.S. Kelley, K. McGarry, R. Gorges.


Ann Intern Med. 2015;163(10):729-736. doi:10.7326/M15-0381
Text Size: A A A

Background: Common diseases, particularly dementia, have large social costs for the U.S. population. However, less is known about the end-of-life costs of specific diseases and the associated financial risk for individual households.

Objective: To examine social costs and financial risks faced by Medicare beneficiaries 5 years before death.

Design: Retrospective cohort.

Setting: The HRS (Health and Retirement Study).

Participants: Medicare fee-for-service beneficiaries, aged 70 years or older, who died between 2005 and 2010 (n = 1702), stratified into 4 groups: persons with a high probability of dementia or those who died because of heart disease, cancer, or other causes.

Measurements: Total social costs and their components, including Medicare, Medicaid, private insurance, out-of-pocket spending, and informal care, measured over the last 5 years of life; and out-of-pocket spending as a proportion of household wealth.

Results: Average total cost per decedent with dementia ($287 038) was significantly greater than that of those who died of heart disease ($175 136), cancer ($173 383), or other causes ($197 286) (P < 0.001). Although Medicare expenditures were similar across groups, average out-of-pocket spending for patients with dementia ($61 522) was 81% higher than that for patients without dementia ($34 068); a similar pattern held for informal care. Out-of-pocket spending for the dementia group (median, $36 919) represented 32% of wealth measured 5 years before death compared with 11% for the nondementia group (P < 0.001). This proportion was greater for black persons (84%), persons with less than a high school education (48%), and unmarried or widowed women (58%).

Limitation: Imputed Medicaid, private insurance, and informal care costs.

Conclusion: Health care expenditures among persons with dementia were substantially larger than those for other diseases, and many of the expenses were uncovered (uninsured). This places a large financial burden on families, and these burdens are particularly pronounced among the demographic groups that are least prepared for financial risk.

Primary Funding Source: National Institute on Aging.

Figures

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Figure 1.

Out-of-pocket expenses and implicit costs of informal care, by dementia and demographic subgroups.

HS = high school.

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Figure 2.

Adjusted and unadjusted end-of-life spending for dementia and nondementia groups.

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Summary for Patients

Health Care Costs for Patients With Dementia at the End of Life

The full report is titled “The Burden of Health Care Costs for Patients With Dementia in the Last 5 Years of Life.” It is in the 17 November 2015 issue of Annals of Internal Medicine (volume 163, pages 729-736). The authors are A.S. Kelley, K. McGarry, R. Gorges, and J.S. Skinner.

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