At the Intersection of Health, Health Care and Policy Cite this article as: John K. Iglehart The Elusive Search For Solutions To Alzheimer's Health Affairs, 33, no.4 (2014):526 doi: 10.1377/hlthaff.2014.0253
The online version of this article, along with updated information and services, is available at: http://content.healthaffairs.org/content/33/4/526.full.html
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Health Affairs is published monthly by Project HOPE at 7500 Old Georgetown Road, Suite 600, Bethesda, MD 20814-6133. Copyright © 2014 by Project HOPE - The People-to-People Health Foundation. As provided by United States copyright law (Title 17, U.S. Code), no part of Health Affairs may be reproduced, displayed, or transmitted in any form or by any means, electronic or mechanical, including photocopying or by information storage or retrieval systems, without prior written permission from the Publisher. All rights reserved.
Not for commercial use or unauthorized distribution Downloaded from content.healthaffairs.org by Health Affairs on June 10, 2015 by guest
from the founding editor
DOI: 10.1377/hlthaff.2014.0253
The Elusive Search For Solutions To Alzheimer’s by john k. iglehart
D
espite decades of effort, finding a cure or breakthrough treat ments for Alzheimer’s has eluded researchers. About 5 million Americans suffer from this devastating disease—the most common cause of dementia among older people—while globally an estimated 35.6 million people struggle with it. In this thematic issue of Health Affairs, we explore the many subjects raised by Alzheimer’s disease: the optimal care patients receive and the testing of new models, international comparisons of how the disease is treated, families’ end-of-life dilemmas, a new public-private research collaboration designed to produce improved treatments, and others. The cost of care for Americans with dementia purchased in the market and informally at home was estimated in a RAND report to have totaled between $159 billion and $215 billion in 2010. Even the lower estimate is greater than the direct treatment costs of cancer or heart disease. framing the discussion In an overview, Julie P.W. Bynum emphasizes that a broad-based policy framework is essential for dealing with Alzheimer’s, given the array of issues that arise and, once diagnosed, its inexorable progression. In national action, driven in part by the major recommendation of the Alzheimer’s Study Group, as Robert Egge discusses, Congress unanimously passed the National Alzheimer’s Project Act of 2011. This act mandated the development of a national plan, whose second version was published in May 2013. But as David Hoffman points out, the law itself is limited in scope and resources.
526
health affairs
april 2014
Joseph Gaugler and coauthors underscore the critical roles of federal and state policies in securing high-quality care for Alzheimer’s patients who reside in nursing homes. Medicare and Medicaid are, by far, major payers of these services. search for successful models The best-practice models of care for Alzheimer’s patients encompass medical and team-based care designed to coordinate care across settings. Although few have been widely adopted nationally, Christopher Callahan and colleagues describe two ongoing such models in Indiana that are supported by the Center for Medicare and Medicaid Innovation (CMMI). In another CMMI-supported project, Zaldy Tan and coauthors launched a program in which a nurse practitioner, acting as a dementia care manager, worked with primary care physicians to deliver care in a large academic health system (University of California, Los Angeles); postvisit surveys reported high levels of caregiver satisfaction. And in another collaborative care model within primary care, Dustin French and coauthors reported riskadjusted cost savings of $3,474 per patient, largely through reduced inpatient expenditures. As Jonathan Bor concludes in a Report From The Field: “At this point, the best medicine may be good primary care.” In an international perspective, Richard Fortinsky and Murna Downs evaluate the national dementia strategies of Australia, England, France, the Netherlands, Norway, Scotland, and the United States. They all address early transitions across care settings, but few strategies address the later, more difficult stages. Jason Karlawish stresses
that Alzheimer’s also confronts society with another challenge, posed as: “How do I live with dignity and quality of life in the face of progressive disability and, ultimately, death?” impact on caregivers One of the devastating effects of Alz heimer’s is its toll on caregivers. Mary Mittelman and Stephen Bartels report decreased depression and distress among caregivers who benefited from psychosocial interventions. But they also found that translating such multicomponent research into practice posed many challenges. revived research agenda Much frustration is derived from the elusive search for cures and a recent RAND study conclusion that the research investment is “not proportionate to the untreated disease burden.” Reflecting this, the National Institutes of Health (NIH), ten pharmaceutical companies, and seven nonprofit organizations announced a unique five-year partnership in February 2014 to accelerate the development of drugs to treat Alzheimer’s and three other challenging conditions: type 2 diabetes, lupus, and rheumatoid arthritis. The new partnership stems in part from cuts to the NIH annual budget after many years of healthy increases. But it also may reflect another trend, which the New York Times reported on March 16 “the scientific community views with a mix of gratitude and trepidation.” The article’s headline is: “Billions with Big Ideas Are Privatizing American Science.” acknowledgments We are indebted to organizations that lent support for publication of this thematic issue of Health Affairs: Eli Lilly and Company, the Alzheimer’s Association, Janssen Research & Development LLC, and Accelerate Cure/Treatments for Alzheimer’s Disease (ACT-AD). We also greatly appreciate the efforts of Dartmouth’s Julie Bynum, who chaired our Alz heimer’s issue planning meeting, served as our editorial adviser, and wrote the overview article. n
33:4
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The online version of this article, along with updated information and services, is available at: http://content.healthaffairs.org/content/33/4/526.full.html
For Reprints, Links & Permissions: http://healthaffairs.org/1340_reprints.php E-mail Alerts : http://content.healthaffairs.org/subscriptions/etoc.dtl To Subscribe: http://content.healthaffairs.org/subscriptions/online.shtml
Health Affairs is published monthly by Project HOPE at 7500 Old Georgetown Road, Suite 600, Bethesda, MD 20814-6133. Copyright © 2014 by Project HOPE - The People-to-People Health Foundation. As provided by United States copyright law (Title 17, U.S. Code), no part of Health Affairs may be reproduced, displayed, or transmitted in any form or by any means, electronic or mechanical, including photocopying or by information storage or retrieval systems, without prior written permission from the Publisher. All rights reserved.
Not for commercial use or unauthorized distribution Downloaded from content.healthaffairs.org by Health Affairs on June 10, 2015 by guest
from the founding editor
DOI: 10.1377/hlthaff.2014.0253
The Elusive Search For Solutions To Alzheimer’s by john k. iglehart
D
espite decades of effort, finding a cure or breakthrough treat ments for Alzheimer’s has eluded researchers. About 5 million Americans suffer from this devastating disease—the most common cause of dementia among older people—while globally an estimated 35.6 million people struggle with it. In this thematic issue of Health Affairs, we explore the many subjects raised by Alzheimer’s disease: the optimal care patients receive and the testing of new models, international comparisons of how the disease is treated, families’ end-of-life dilemmas, a new public-private research collaboration designed to produce improved treatments, and others. The cost of care for Americans with dementia purchased in the market and informally at home was estimated in a RAND report to have totaled between $159 billion and $215 billion in 2010. Even the lower estimate is greater than the direct treatment costs of cancer or heart disease. framing the discussion In an overview, Julie P.W. Bynum emphasizes that a broad-based policy framework is essential for dealing with Alzheimer’s, given the array of issues that arise and, once diagnosed, its inexorable progression. In national action, driven in part by the major recommendation of the Alzheimer’s Study Group, as Robert Egge discusses, Congress unanimously passed the National Alzheimer’s Project Act of 2011. This act mandated the development of a national plan, whose second version was published in May 2013. But as David Hoffman points out, the law itself is limited in scope and resources.
526
health affairs
april 2014
Joseph Gaugler and coauthors underscore the critical roles of federal and state policies in securing high-quality care for Alzheimer’s patients who reside in nursing homes. Medicare and Medicaid are, by far, major payers of these services. search for successful models The best-practice models of care for Alzheimer’s patients encompass medical and team-based care designed to coordinate care across settings. Although few have been widely adopted nationally, Christopher Callahan and colleagues describe two ongoing such models in Indiana that are supported by the Center for Medicare and Medicaid Innovation (CMMI). In another CMMI-supported project, Zaldy Tan and coauthors launched a program in which a nurse practitioner, acting as a dementia care manager, worked with primary care physicians to deliver care in a large academic health system (University of California, Los Angeles); postvisit surveys reported high levels of caregiver satisfaction. And in another collaborative care model within primary care, Dustin French and coauthors reported riskadjusted cost savings of $3,474 per patient, largely through reduced inpatient expenditures. As Jonathan Bor concludes in a Report From The Field: “At this point, the best medicine may be good primary care.” In an international perspective, Richard Fortinsky and Murna Downs evaluate the national dementia strategies of Australia, England, France, the Netherlands, Norway, Scotland, and the United States. They all address early transitions across care settings, but few strategies address the later, more difficult stages. Jason Karlawish stresses
that Alzheimer’s also confronts society with another challenge, posed as: “How do I live with dignity and quality of life in the face of progressive disability and, ultimately, death?” impact on caregivers One of the devastating effects of Alz heimer’s is its toll on caregivers. Mary Mittelman and Stephen Bartels report decreased depression and distress among caregivers who benefited from psychosocial interventions. But they also found that translating such multicomponent research into practice posed many challenges. revived research agenda Much frustration is derived from the elusive search for cures and a recent RAND study conclusion that the research investment is “not proportionate to the untreated disease burden.” Reflecting this, the National Institutes of Health (NIH), ten pharmaceutical companies, and seven nonprofit organizations announced a unique five-year partnership in February 2014 to accelerate the development of drugs to treat Alzheimer’s and three other challenging conditions: type 2 diabetes, lupus, and rheumatoid arthritis. The new partnership stems in part from cuts to the NIH annual budget after many years of healthy increases. But it also may reflect another trend, which the New York Times reported on March 16 “the scientific community views with a mix of gratitude and trepidation.” The article’s headline is: “Billions with Big Ideas Are Privatizing American Science.” acknowledgments We are indebted to organizations that lent support for publication of this thematic issue of Health Affairs: Eli Lilly and Company, the Alzheimer’s Association, Janssen Research & Development LLC, and Accelerate Cure/Treatments for Alzheimer’s Disease (ACT-AD). We also greatly appreciate the efforts of Dartmouth’s Julie Bynum, who chaired our Alz heimer’s issue planning meeting, served as our editorial adviser, and wrote the overview article. n
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