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 Alzheimer’s Disease and
Alzheimer’s Disease–Related Dementias
Board on Behavioral, Cognitive, and Sensory Sciences
Division of Behavioral and Social Sciences and Education
A Consensus Study Report of
THE NATIONAL ACADEMIES PRESS
Washington, DC
www.nap.edu
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This activity was supported by contracts between the National Academy of Sciences and the AARP (Unnumbered), JPB Foundation (2019-1737), the National Institute on Aging (HHSN263201800029I/75N98020F00001), the National Institutes of Health (NNSN2632018000029I/HHSN263000037), Office of the Assistant Secretary for Planning and Evaluation (HHSP233201400020B/75P00119F37098), and U.S. Department of Veterans Affairs (101D93004), with contributions to the project from the Alzheimer’s 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: 978-0-309-49503-5
International Standard Book Number-10: 0-309-49503-2
Digital Object Identifier: https://doi.org/10.17226/26175
Library of Congress Control Number: 2021946373
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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.
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COMMITTEE ON THE DECADAL SURVEY OF BEHAVIORAL AND SOCIAL SCIENCE RESEARCH ON ALZHEIMER’S DISEASE AND ALZHEIMER’S DISEASE–RELATED DEMENTIAS
TIA POWELL (Chair), Montefiore Health System and Albert Einstein College of Medicine
KAREN S. COOK (Vice Chair) (NAS), Stanford University
MARGARITA ALEGRÍA (NAM), Massachusetts General Hospital and Harvard Medical School
DEBORAH BLACKER, Massachusetts General Hospital and Harvard University
M. MARIA GLYMOUR, University of California, San Francisco
ROEE GUTMAN, Brown University
MARK D. HAYWARD, University of Texas at Austin
RUTH KATZ, LeadingAge
SPERO M. MANSON (NAM), University of Colorado Anschutz Medical Campus
TERRIE E. MOFFITT (NAM), Duke University
VINCENT MOR (NAM), Brown University
DAVID B. REUBEN, University of California, Los Angeles
ROLAND J. THORPE JR., Johns Hopkins University
RACHEL M. WERNER (NAM), University of Pennsylvania
KRISTINE YAFFE (NAM), University of California, San Francisco
JULIE M. ZISSIMOPOULOS, University of Southern California
Advisory Panel
CYNTHIA HULING HUMMEL, living with dementia, Elmira, NY
MARIE MARTINEZ ISRAELITE, care partner/caregiver, Chevy Chase, MD
JOHN-RICHARD PAGAN, living with dementia, Woodbridge, VA
EDWARD PATTERSON, living with dementia, Clermont, FL
BRIAN VAN BUREN, living with dementia, Charlotte, NC
GERALDINE WOOLFOLK, care partner/caregiver, Oakland, CA
Study Staff
MOLLY CHECKSFIELD DORRIES,Study Director
ALEXANDRA BEATTY,Senior Program Officer
TINA M. WINTERS,Associate Program Officer
JACQUELINE L. COLE,Senior Program Assistant
BOARD ON BEHAVIORAL, COGNITIVE, AND SENSORY SCIENCES
TERRIE E. MOFFITT (Chair) (NAM), Duke University
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
About the Cover
Much of the American population has been directly affected by dementia; beyond the more than 6 million individuals in the United States currently living with dementia are millions more with close relatives, friends, or other loved ones who have received a dementia diagnosis. This reality is reflected on the cover, which includes a collage of images provided by members of the authoring committee for the report, the study staff, and the advisory panel for the study. Many of the committee members have had relatives who received a dementia diagnosis, as have all four members of the study staff, and the advisory panel for the study was composed of individuals living with a dementia diagnosis and individuals who have served as care partners to a person living with dementia; the collage reflects only a subset of those directly affected by dementia who contributed to the report. Each adult pictured on the cover received a dementia diagnosis (with one exception as noted in the captions below) and is either shown prior to their diagnosis or living life to the fullest postdiagnosis.
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Preface
There are few Americans who do not have a family member, friend, neighbor, or colleague living with Alzheimer’s 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 more than 6 million Americans who have dementia today or for those whose brains have sufficiently changed that symptoms will likely follow in the next few years.
However, lack of a cure does not mean there is no hope for those with Alzheimer’s 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 America’s 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 study would not have been possible without the contributions of many people. From its very first meeting and throughout the study, the committee benefitted tremendously from the efforts of a group of individuals who were living with a dementia diagnosis or had served as care partners to individuals with dementia and agreed to lend their time and energy to serve as an advisory panel to the study: Cynthia Huling Hummel (living with dementia), Marie Martinez Israelite (care partner), John-Richard Pagan (living with dementia), Ed Patterson (living with dementia), Brian Van Buren (living with dementia), and Geraldine Woolfolk (care partner). Members of the advisory panel gave presentations and served as discussants at our public workshops, participated in many in-person and virtual meetings, worked with staff to develop a call for commentaries from individuals with dementia and care partners, prepared a paper describing the experiences of individuals with dementia and care partners, and offered thoughtful comments on sections of the report. We are indebted for the grounding they provided in the experiences of those directly affected by dementia. In addition, Karen Love (Dementia Action Alliance) provided invaluable facilitation of the advisory panel’s work and guidance to the study staff during the information gathering phase of the study, and we deeply appreciate her giving so generously of her time and wisdom.
We gained useful information and insights from several commissioned papers and thank the authors for their careful analyses and presentation of their work at public workshops: David A. Bennett (Rush University); Julie P.W. Bynum (University of Michigan) and Kenneth Langa (University of Michigan); Joseph E. Gaugler (University of Minnesota), Laura N. Gitlin (Drexel University), and Eric Jutkowitz (Brown University); Pei-Jung Lin (Tufts Medical Center); and Ana R. Quiñones (Oregon Health & Science University), Jeffrey Kaye (Oregon Health & Science University), Heather G. Allore (Yale University), Stephen Thielke (University of Washington), and Anda Botoseneanu (University of Michigan).
A number of other individuals lent their expertise to the study through presentations at public workshops: Scott Beach (University of Pittsburgh), Catherine A. Christian (New York County District Attorney’s Office), Olivier Constant (Flanders Centre of Expertise on Dementia, Belgium), Leslie Chang Evertson (University of California, Los Angeles), Richard H. Fortinsky (UConn Health and UConn Center on Aging), Nathan Gray (Duke University), Jhamirah Howard (U.S. Department of Health and Human Services), Judith Kasper (University of Pittsburgh), Mika Kivimaki (University College London), Peter A. Lichtenberg (Wayne State University), Susan Mitchell (Hebrew SeniorLife), Mary Mittelman (New York University School of Medicine), Emily O’Brien (Duke University School of Medicine), Rani E. Snyder (The John A. Hartford Foundation), and David Stevenson (Vanderbilt University School of Medicine). We also thank Jim Butler (living with dementia), Michael Ellenbogen (living with dementia), Katie Jordan (care partner), and all those who responded to our call for white papers, participated in public comment sessions at workshops, and responded to the call for commentaries from individuals with dementia and care partners for their input to the study.
We express our appreciation for the staff team: study director Molly Checksfield Dorries, who worked tirelessly to keep the study organized and moving forward, along with Alix Beatty, Jacqueline Cole, and Tina Winters. We also thank Rebecca Krone for lending her graphic design talents, Kirsten Sampson Snyder for managing the report review process, Yvonne Wise for managing the report production process, and Rona Briere and Allison Boman for their skillful editing.
The committee is grateful to the AARP, the Alzheimer’s Association, the American Psychological Association, The John. A. Hartford Foundation, the JPB Foundation, the National Institute on Aging, the National Institutes of Health, the Office of the Assistant Secretary for Planning and Evaluation within the U.S. Department of Health and Human Services, and the U.S. Department of Veterans Affairs.
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: Allison E. Aiello (Gillings School of Global Public Health at Chapel Hill, The University of North Carolina), Maria P. Aranda (Suzanne Dworak-Peck School of Social Work, Edward R. Roybal Institute on Aging, University
of Southern California), Malaz Boustani (Center for Health Innovation and Implementation Science, Indiana University School of Medicine and Senior Care Innovation, Eskenazi Health), Christopher M. Callahan (Eskenazi Health and Indiana University School of Medicine and IU Center for Aging Research, Regenstrief Institute, Inc.), Maria M. Corrada (Institute for Memory Impairments and Neurological Disorders, University of California, Irvine), Kimberly Curyto (Center for Integrated Healthcare, VA Western New York Healthcare System), Gary Epstein-Lubow (Alpert Medical School and School of Public Health, Brown University), Karen I. Fredriksen Goldsen (Center for Aging and Health, Sexuality and Gender Research Center, University of Washington), J. Neil Henderson (Memory Keepers Medical Discovery Team–Health Equity and Department of Family Medicine & Biobehavioral Health, University of Minnesota Medical School), Kenneth M. Langa (School of Medicine, University of Michigan and VA Ann Arbor Healthcare System), Anne Montgomery (Center for Eldercare Improvement, Altarum, Washington, DC), Samuel H. Preston (Department of Sociology, University of Pennsylvania), Sally Sadoff (School of Management, University of California, San Diego), William M. Sage (School of Law and Dell Medical School, The University of Texas at Austin), Tetyana P. Shippee (School of Public Health and Center for Healthy Aging and Innovation, University of Minnesota), and 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.
Tia Powell, Chair
Karen S. Cook, Vice Chair
Contents
Applying the Social and Behavioral Sciences to the Study of Dementia
Context for Research on the Impacts of Dementia
Disparities in Rates of Dementia and in Care and Resources
2 Prevention and Protective Factors
Influences on Cognitive Health in Individuals
Evidence About Risk and Protection for Cognitive Health
Potentially Important Risk Factors That Have Received Less Attention
Use of Emerging Evidence to Promote Public Health
Racial/Ethnic Disparities in Dementia Risk
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
Challenges in Communicating with Doctors and Other Health Care Professionals
Research on Key Aspects of Living with 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
4 Caregivers: Diversity in Demographics, Capacities, and Needs
Family Caregivers’ Perspectives
Caregiver Capacity and Screening
Use of Technology to Support Caregiving
Approaches for Addressing Behavioral and Psychological Symptoms of Dementia
Disparities That Affect the Impact of Dementia
Links Between Community Characteristics and Cognitive Health
The Role of Race and Ethnicity
Looking Through a Community Lens
Opportunities to Support Communities
A Patchwork of Resources and Supports
Building Community Responsiveness and Resilience
Housing for People Living with Dementia
Caregiver Support: Washington State
Aging in Place Challenge Program: Canada
The Village Movement: Beacon Hill, Boston, Massachusetts
6 Health Care, Long-Term Care, and End-of-Life Care
Fragmentation of Care Delivery
A Model of Comprehensive Care at the Population Level
Long-Term and End-of-Life Care
Assisted Living and Memory Units
The Federal Role in Innovation
Medicare Advantage and Dementia Care
A Word About the Costs of Aducanumab
8 Strengthening Data Collection and Research Methodology
Challenges of Quantitative Research on Dementia
Four Opportunities for Improvements in Methodology
Developing New Data Sources and Adding Items to Existing Sources
Linking Existing Data Sources in New Ways
Identifying Valid Early Predictors of Cognitive Outcomes
Broadening the Repertoire of Tools
Enhancing Analyses of Randomized Controlled Trials
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
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
9 Ten-Year Research Priorities
A Biographical Sketches of Committee and Advisory Panel Members
B The Paid Health Care Workforce
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