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PREPUBLICATIONÂ COPY,Â UNCORRECTEDÂ PROOFSÂ CONSENSUSÂ STUDYÂ REPORTÂ Reducing the Impact of Dementia in America: A Decadal Survey of the Behavioral and Social Sciences Committee on the Decadal Survey of Behavioral and Social Science Research on Alzheimerâs Disease and Alzheimerâs DiseaseâRelated Dementias Board on Behavioral, Cognitive, and Sensory Sciences Division of Behavioral and Social Sciences and Education A Consensus Study Report of Â
PREPUBLICATIONÂ COPY,Â UNCORRECTEDÂ PROOFSÂ THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001 This activity was supported by contracts between the National Academy of Sciences and the AARP (Unnumbered), Department of Veterans Affairs (101D93004), JPB Foundation (2019-1737), the National Institutes of Health (NNSN2632018000029I /HHSN263000037) and the National Institute on Aging (HHSN263201800029I /75N98020F00001), Office of the Assistant Secretary for Planning and Evaluation (HHSP233201400020B /75P00119F37098), with contributions to the project from the Alzheimerâs Association, the American Psychological Association, and The John. A. Hartford Foundation. Support for the work of the Board on Behavioral, Cognitive, and Sensory Sciences is provided primarily by a grant from the National Science Foundation (Award No. BCS-1729167). Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily reflect the views of any organization or agency that provided support for the project. International Standard Book Number-13: 978-0-309-XXXXX-X International Standard Book Number-10: 0-309-XXXXX-X Digital Object Identifier: https://doi.org/10.17226/26175 Additional copies of this publication are available from the National Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (800) 624-6242 or (202) 334-3313; http://www.nap.edu. Copyright 2021 by the National Academy of Sciences. All rights reserved. Printed in the United States of America Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2021. Reducing the Impact of Dementia in America: A Decadal Survey of the Behavioral and Social Sciences. Washington, DC: The National Academies Press. https://doi.org/10.17226/26175.
PREPUBLICATIONÂ COPY,Â UNCORRECTEDÂ PROOFSÂ The National Academy of Sciences was established in 1863 by an Act of Congress, signed by President Lincoln, as a private, nongovernmental institution to advise the nation on issues related to science and technology. Members are elected by their peers for outstanding contributions to research. Dr. Marcia McNutt is president. The National Academy of Engineering was established in 1964 under the charter of the National Academy of Sciences to bring the practices of engineering to advising the nation. Members are elected by their peers for extraordinary contributions to engineering. Dr. John L. Anderson is president. The National Academy of Medicine (formerly the Institute of Medicine) was established in 1970 under the charter of the National Academy of Sciences to advise the nation on medical and health issues. Members are elected by their peers for distinguished contributions to medicine and health. Dr. Victor J. Dzau is president. The three Academies work together as the National Academies of Sciences, Engineering, and Medicine to provide independent, objective analysis and advice to the nation and conduct other activities to solve complex problems and inform public policy decisions. The National Academies also encourage education and research, recognize outstanding contributions to knowledge, and increase public understanding in matters of science, engineering, and medicine. Learn more about the National Academies of Sciences, Engineering, and Medicine at www.nationalacademies.org.
PREPUBLICATIONÂ COPY,Â UNCORRECTEDÂ PROOFSÂ Consensus Study Reports published by the National Academies of Sciences, Engineering, and Medicine document the evidence-based consensus on the studyâs statement of task by an authoring committee of experts. Reports typically include findings, conclusions, and recommendations based on information gathered by the committee and the committeeâs deliberations. Each report has been subjected to a rigorous and independent peer-review process and it represents the position of the National Academies on the statement of task. Proceedings published by the National Academies of Sciences, Engineering, and Medicine chronicle the presentations and discussions at a workshop, symposium, or other event convened by the National Academies. The statements and opinions contained in proceedings are those of the participants and are not endorsed by other participants, the planning committee, or the National Academies. For information about other products and activities of the National Academies, please visit www.nationalacademies.org/about/whatwedo. Â
PREPUBLICATIONÂ COPY,Â UNCORRECTEDÂ PROOFSÂ Committee on the Decadal Survey of Behavioral and Social Science Research on Alzheimerâs Disease and Alzheimerâs DiseaseâRelated Dementias TIA POWELL, Montefiore Einstein Center for Bioethics, Chair KAREN S. COOK (NAS), Stanford University, Vice Chair MARGARITA ALEGRÃA (NAM), Massachusetts General Hospital DEBORAH BLACKER, Harvard University MARIA GLYMOUR, University of California, San Francisco ROEE GUTMAN, Brown University MARK HAYWARD, University of Texas at Austin RUTH KATZ, LeadingAge SPERO M. MANSON (NAM), University of Colorado TERRIE E. MOFFITT (NAM), Duke University VINCENT MOR (NAM), Brown University DAVID REUBEN, University of California, Los Angeles ROLAND J. THORPE JR., Johns Hopkins University RACHEL WERNER (NAM), University of Pennsylvania KRISTINE YAFFE (NAM), University of California, San Francisco JULIE M. ZISSIMOPOULOS, Associate Professor, Sol Price School of Public Policy, University of Southern California Advisory Panel CYNTHIA HULING HUMMEL, living with dementia, Elmira, New York MARIE MARTINEZ ISRAELITE, care parter/caregiver, Chevy Chase, Maryland JOHN-RICHARD PAGAN, living with dementia, Woodbridge, Virginia EDWARD PATTERSON, living with dementia, Clermont, Florida BRIAN VAN BUREN, living with dementia, Charlotte, North Carolina GERALDINE WOOLFOLK, care partner/caregiver, Oakland, California Study Staff MOLLY CHECKSFIELD DORRIES, Study Director ALEXANDRA BEATTY, Senior Program Officer JACQUELINE L. COLE, Senior Program Assistant TINA M. WINTERS, Associate Program Officer vÂ
PREPUBLICATIONÂ COPY,Â UNCORRECTEDÂ PROOFSÂ Board on Behavioral, Sensory, and Cognitive Sciences TERRIE E. MOFFITT (NAM), Duke University, Chair RICHARD N. ASLIN (NAS), Yale University JOHN BAUGH, Washington University in St. Louis WILSON S. GEISLER (NAS), University of Texas at Austin MICHELE GELFAND (NAS), University of Maryland, College Park ULRICH MAYR, University of Oregon KATHERINE L. MILKMAN, University of Pennsylvania ELIZABETH A. PHELPS, Harvard University DAVID E. POEPPEL, New York University STACEY SINCLAIR, Princeton University TIMOTHY J. STRAUMAN, Duke University ADRIENNE STITH BUTLER, Director viÂ
PREPUBLICATIONÂ COPY,Â UNCORRECTEDÂ PROOFSÂ Preface There are few Americans who do not have a family member, friend, neighbor, or colleague living with Alzheimerâs disease or another dementia. The members of this committee represent a broad range of academic expertise related to dementia, but many of us have also been touched by the disease in our own lives. We have seen first-hand its complexities and challenges. There is no cure today for any of the dementias, and it is unclear when truly disease- modifying treatments will arrive. Even if medications soon emerge that can slow or prevent dementia, they are unlikely to provide relief for the nearly 6 million Americans who have dementia today or whose brains have sufficiently changed that symptoms will likely follow in the next few years. However, lack of cure does not mean there is no hope for those with Alzheimerâs disease and related dementias and those who care about them. Existing behavioral and social science research indicates promising directions for how it may be possible to slow the development of symptoms, support those who do have symptoms, and enhance the quality of life for both those living with dementia and their family caregivers. This report offers a blueprint for the next decade of behavioral and social science research to reduce the negative impact of dementia for Americaâs diverse population. It calls for research that addresses the causes and solutions for disparities in both developing dementia and receiving adequate treatment and support. It calls for research that sets goals meaningful not just for scientists but for people living with dementia and those who support them as well. It calls for significant improvements in research design to create interventions that will succeed in the real world, not only in the controlled context of research. The committee worked to devise a plan for research that will have a real impact for good for a broad range of people, including populations that are often bypassed by health care improvements. In this report, we call for research that will not only ameliorate symptoms but also enhance the quality of health care and quality of life. For all of us, serving on this committee was a chance to work together to draft a plan that can deliver the full benefit of behavioral and social science research to a critically important common good: reducing the negative impacts of a debilitating and ultimately fatal disease. We are optimistic that the research agenda described here can advance that common good, and so benefit the many among us living with the impact of dementia now or in the future. This Consensus Study Report was reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise. The purpose of this independent review is to provide candid and critical comments that will assist the National Academies of Sciences, Engineering, and Medicine in making each published report as sound as possible and to ensure that it meets the institutional standards for quality, objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process. We thank the following individuals for their review of this report: viiÂ
PREPUBLICATIONÂ COPY,Â UNCORRECTEDÂ PROOFSÂ ï· Allison E. Aiello, Gillings School of Global Public Health at Chapel Hill, The University of North Carolina ï· Maria P. Aranda, Suzanne Dworak-Peck School of Social Work, Edward R. Roybal Institute on Aging, University of Southern California ï· Malaz Boustani, Center for Health Innovation and Implementation Science, Indiana University School of Medicine and Senior Care Innovation, Eskenazi Health ï· Christopher M. Callahan, Eskenazi Health and Indiana University School of Medicine and IU Center for Aging Research, Regenstrief Institute, Inc. ï· Maria M. Corrada, Institute for Memory Impairments and Neurological Disorders (UCI MIND), University of California, Irvine ï· Kimberly Curyto, Center for Integrated Healthcare (CIH), VA Western New York Healthcare System ï· Gary Epstein-Lubow, Alpert Medical School and School of Public Health, Brown University ï· Karen I. Fredriksen Goldsen, Center for Aging and Health, Sexuality and Gender Research Center, University of Washington ï· J. Neil Henderson, Memory Keepers Medical Discovery Team - Health Equity and Department of Family Medicine & Biobehavioral Health, University of Minnesota Medical School ï· Kenneth M. Langa, School of Medicine, University of Michigan and Veterans Affairs Ann Arbor Healthcare System ï· Anne Montgomery, Center for Eldercare Improvement, Altarum, Washington DC ï· Samuel H. Preston, Department of Sociology, University of Pennsylvania ï· Sally Sadoff, School of Management, University of California, San Diego ï· William M. Sage, School of Law and Dell Medical School, The University of Texas at Austin ï· Tetyana P. Shippee, School of Public Health and Center for Healthy Aging and Innovation, University of Minnesota ï· Jennifer L. Wolff, Roger C. Lipitz Center for Integrated Health Care, Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health Although the reviewers listed above provided many constructive comments and suggestions, they were not asked to endorse the conclusions or recommendations of this report, nor did they see the final draft before its release. The review of this report was overseen by Dan G. Blazer, Duke University Medical Center, and Eric B. Larson, Kaiser Foundation Health Plan, Inc. They were responsible for making certain that an independent examination of this report was carried out in accordance with the standards of the National Academies and that all review comments were carefully considered. Responsibility for the final content rests entirely with the authoring committee and the National Academies. viiiÂ
PREPUBLICATIONÂ COPY,Â UNCORRECTEDÂ PROOFSÂ Table of Contents Summary 1 Introduction About This Study Study Charge Purpose of a Decadal Survey Applying the Social and Behavioral Sciences to the Study of Dementia Context for Research on the Impacts of Dementia A Large and Growing Problem Disparities in Rates of Dementia and in Care and Resources COVID-19 and Dementia Study Approach and Scope Study Scope Information Gathering Guiding Themes Report Structure References 2 Preventive and Protective Factors Interpreting the Evidence Influences on Cognitive Health in Individuals Evidence about Risk and Protection for Cognitive Health 2017 National Academies Report Lancet Commission Report Potentially Important Risk Factors that Have Received Less Attention Use of Emerging Evidence to Promote Public Health Socioeconomic Risk Socioeconomic Factors Education Occupation Financial Resources Racial and Ethnic Disparities in Dementia Risk Research Directions References 3 Improving Outcomes for Individuals Living with Dementia Perspectives on Living with Dementia Problems in Obtaining an Accurate and Timely Dementia Diagnosis Problems in Obtaining Supports and Services ixÂ
PREPUBLICATIONÂ COPY,Â UNCORRECTEDÂ PROOFSÂ Challenges in Communicating with Doctors and Other Health Care Professionals Fear and Loss Research on Key Aspects of Living with Dementia Diagnosing Dementia Challenges in Arriving at a Diagnosis Questions about Communicating a Dementia Diagnosis Promoting Autonomy and Protecting from Harm Financial Decisions and Potential for Abuse Sexual Behavior, Risk, and Dementia Resources for Assessing and Supporting Decisions Interventions to Alleviate the Impact of Dementia Goals for the Care of Persons Living with Dementia Approaches for Addressing Key Dementia Symptoms Research Directions References 4 Caregivers: Diversity in Demographics, Capacities, and Needs Reliance on Family Caregivers Family Caregiversâ Perspectives Research on Family Caregiving The Caregiving Experience Caregiver Capacity and Screening Supports for Family Caregivers Intervention Research Focus on Three Key Issues: Care Transitions, Use of Assistive Technology, and Approaches for Addressing Behavioral and Psychological Symptoms Care Transitions Use of Technology to Support Caregiving Approaches for Addressing Behavioral and Psychological Symptoms of Dementia Research Directions References 5 The Role of the Community Disparities that Affect the Impact of Dementia Links between Community Characteristics and Cognitive Health The Role of Race/Ethnicity Looking through a Community Lens Opportunities to Support Communities Types of Resources A Patchwork of Resources and Supports Building Community Responsiveness and Resilience Housing for People Living with Dementia Dementia Friendly Communities Caregiver Support: Washington State Aging in Place Challenge Program: Canada The Village Movement: Beacon Hill, Boston, Massachusetts xÂ
PREPUBLICATIONÂ COPY,Â UNCORRECTEDÂ PROOFSÂ Research Directions References 6 Health Care, Long-term Care, and End-of-Life Care The Health Care System Quality of Primary Care Fragmentation of Care Delivery Comprehensive Dementia Care A Model of Comprehensive Care at the Population Level Knowledge Gaps Long-term and End-of-Life Care Assisted Living and Memory Units Nursing Homes Alternatives to Nursing Homes Palliative and Hospice Care Paying for Care: Medicare and Medicaid Coverage The Federal Role in Innovation Managed Care How Managed Care Works Medicare Advantage and Dementia Care Research Directions References 7 Economic Costs of Dementia Magnitude of Economic Costs Drivers of Costs The Economics of Innovation Applying Behavioral Economics A Word about the Costs of Aducanumab Research Directions References 8 Strengthening Data Collection and Research Methodology Challenges of Quantitative Research on Dementia Four Opportunities for Improvements in Methodology Data Sources Developing New Data Sources and Adding Items to Existing Sources Linking Existing Data Sources in New Ways Improving Recruitment Measurement Measuring Exposures Identifying Valid Early Predictors of Cognitive Outcomes Study Design Broadening the Repertoire of Tools xiÂ
PREPUBLICATIONÂ COPY,Â UNCORRECTEDÂ PROOFSÂ Creating Opportunities for Quasi-Experimental Discovery, Including Leveraging Instrumental Variables Analyses Enhancing Analyses of Randomized Controlled Trials (RCTs) Moving from Evidence to Implementation Conducting Pragmatic Clinical Trials Embedded in Health Systems Evaluating Complex, Dynamic Interventions Simulations, Microsimulations, Agent-Based Models, and Complex Systems Models Formalizing Study Design Approaches Evidence Integration Methods for Assessing Heterogeneity and Generalizing Results Tools for Systematically Combining Evidence Tools for Quantifying Impacts of Policies, Interventions, or Therapies Investment in Human Capital and Research Capacity Research Directions References 9 Ten-Year Research Priorities Research Agenda Call to Action Appendixes A Biographical Sketches of Committee and Advisory Panel Members B The Paid Health Care Workforce C Synthesis of Reviews of Nonpharmacologic Interventions D Complete Research Agenda xiiÂ