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Project Information

Project Information

Care Interventions for Individuals with Dementia and Their Caregivers

Project Scope:

An ad hoc committee will provide input into the design of an Agency for Healthcare Research and Quality (AHRQ) systematic review of evidence on effective care-related interventions for people with dementia and their caregivers. The AHRQ systematic review will examine care interventions relevant to Alzheimer’s disease and related dementias (including Lewy body dementia, frontotemporal dementia, and vascular cognitive impairment/dementia), and it will consider outcomes such as health outcomes, quality of life and experiences of the people with dementia and their caregivers, and utilization of services. It will also consider how the effectiveness of particular care interventions may differ as a function of the characteristics of people with dementia and their caregivers (e.g., age, sex, race/ethnicity, socioeconomic status, dementia severity, family/household characteristics, and training). The goal is to inform decision making about which care/nonpharmacologic interventions are ready for dissemination and implementation on a broad scale.

Preliminary key questions and a preliminary study design will be jointly developed by the National Institutes of Health (NIH), AHRQ, and the evidence-based practice center (EPC) that AHRQ will contract with to conduct the systematic review. Responding to this, the ad hoc committee will provide advisory input to NIH, AHRQ, and the EPC in the form of a short letter report that describes potential changes and considerations for the key questions and study design that would result in the most informative and timely evidence review on this topic. Prior to implementation of the review protocol, the committee will convene with NIH, AHRQ, and the EPC for a briefing and discussion of the draft review protocol.

Status: Current

PIN: HMD-HSP-18-04

Project Duration (months): 12 month(s)

RSO: Stroud, Clare


Health and Medicine

Geographic Focus:

Committee Membership

Committee Post Date: 10/03/2018

Eric B. Larson - (Chair)
Eric B. Larson, MD, MPH, is Vice President for Research and Health Care Innovation, Kaiser Foundation Health Plan of Washington, and Executive Director and Senior Investigator, Kaiser Permanente Washington Health Research Institute. A graduate of Harvard Medical School, Dr. Larson trained in internal medicine at Beth Israel Hospital, in Boston, completed a Robert Wood Johnson Clinical Scholars and M.P.H. program at the University of Washington, and then served as Chief Resident of University Hospital in Seattle. He served as Medical Director of University of Washington (UW) Medical Center and Associate Dean for Clinical Affairs from l989-2002. His research spans a range of general medicine topics and has focused on aging and dementia, including a long running study of aging and cognitive change set in Kaiser Permanente Washington (formerly known as Group Health Cooperative) - The UW/Group Health Alzheimer's Disease Patient Registry/Adult Changes in Thought Study. Dr. Larson has served as President of the Society of General Internal Medicine, Chair of the OTA/DHHS Advisory Panel on Alzheimer's Disease and Related Disorders and was Chair of the Board of Regents (2004-05), American College of Physicians. He is an elected member of the National Academy of Medicine.
Marilyn Albert
Marilyn Albert, PhD, is Director, Division of Cognitive Neuroscience and Professor of Neurology and Director, Division of Cognitive Neuroscience at Johns Hopkins University School of Medicine. She is also Director of the Johns Hopkins Alzheimer’s Disease Research Center. She received her Ph.D. degree in Physiological Psychology from McGill University in Montreal and completed a fellowship in Neuropsychology at Boston University School of Medicine. She served on the faculty of the Harvard Medical School for over 22 years and has been at Johns Hopkins for over 15 years. Now a Professor of Neurology at Johns Hopkins and Director of the Division of Cognitive Neuroscience, Dr. Albert focuses on the cognitive and brain changes associated with aging and Alzheimer’s disease (AD). Her work has delineated the cognitive changes associated with aging and early AD, along with potential methods of early identification of AD. She has also identified lifestyle factors that promote maintenance of mental abilities with advancing age. Dr. Albert’s research currently focuses on the early identification of AD, and potential ways of monitoring the progression of disease to permit early intervention.
Maria P. Aranda
María P. Aranda, PhD, MSW, MPA, LCSW is Associate Professor, USC Suzanne Dworak-Peck School of Social Work, and Executive Director, USC Edward R. Roybal Institute on Aging at the University of Southern California. She joined the social work faculty in 1995 and holds a joint appointment with the USC Leonard Davis School of Gerontology. Dr. Aranda’s research, teaching, and practice interests address the study of psychosocial care of adult and late-life psychiatric disorders including depression and Alzheimer’s disease and related dementias. She is interested in examining racial and ethnic diversity in the delivery of health and mental health services, disparities in health and health care, and testing of psychosocial interventions to alleviate illness burden among persons living with medical and psychiatric illnesses and their family caregivers. Dr. Aranda has served as principal investigator or co-investigator on several key studies funded by and/or in collaboration with the National Institute of Mental Health, National Cancer Institute, Patient-Centered Outcomes Research Institute, The John A. Hartford Foundation/The Gerontological Society of America, the California Community Foundation, National Institute of Rehabilitation and Research, Alzheimer’s Association/Health Resources and Services Administration, Los Angeles County Department of Mental Health, and the Larson Endowment for Innovative Research. She co-pioneered a state-of-the-art family support program (“El Portal”) for low-income, Spanish-speaking families dealing with neurodegenerative disorders which is a national model for family caregiving in hard-to-reach communities. She has served on local and national boards and committees dedicated to the enhancement of practice, policy, research and advocacy related to underrepresented minority populations. Dr. Aranda has served on several consensus committees at the National Academies of Sciences, Engineering, and Medicine on the geriatric workforce in mental health and substance use service sectors, family caregiving to older adults with functional limitations, financial capacity determination and functional assessments among Social Security beneficiaries. She is a licensed psychotherapist with 30 years of experience providing bilingual and bicultural mental health services to middle-aged and older adults and their families.
Marilyn Blum
Marilyn Blum, BA, was a caregiver for her husband, Steve, who was diagnosed in 2005 with mild cognitive impairment, probable Alzheimer’s Disease, at age 59. In 2006, Ms. Blum became involved with Alzheimer’s advocacy and awareness activities, in conjunction with the Greater Maryland chapter of the Alzheimer’s Association. She has testified before the Aging Subcommittee of the U. S. Senate Health, Education, Labor and Pensions Committee in support of increased funding for AD research and to raise public awareness of the impact of younger-onset dementia on patients and families; visited members of Congress on Capitol Hill for the same purposes; from 2008 to present, acted as Facilitator for a monthly support group for relatives and friends of people with dementia; and participated in work groups and on caregiver panels at various events. Ms. Blum was employed at the Social Security Administration (SSA) in Baltimore since 1966. She retired in 1999 as Director of the SSA’s Center for Supply Management. Ms. Blum received her B.A. from University of Maryland Baltimore County in 1976.
Christopher Callahan
Christopher M. Callahan, MD, is the Chief Research and Development Officer at Eskenazi Health and Professor of Medicine at the Indiana University School of Medicine. He served as the Director of the Indiana University Center for Aging Research from 1997-2018. He is also an Investigator at the Regenstrief Institute, Inc. and a Master in the American College of Physicians. His research seeks to improve outcomes for older adults with late life depression and dementia, focused on innovative models of care that support the caregiver and generalist physician in their day-to-day provision of health to older adults. Dr. Callahan has spent more than two decades developing and exploring new treatment options for older adults. He was recognized in 2016 with the Edward Henderson Award from the American Geriatrics Society. Dr. Callahan attended the St. Louis University School of Medicine, completed his internship and residency at Baylor College of Medicine, and fellowship at the Indiana University School of Medicine.
Eileen M. Crimmins
Eileen M. Crimmins, PhD, is the AARP Professor of Gerontology in the Leonard Davis School of Gerontology at the University of Southern California. She is a member of the National Academy of Sciences and the National Academy of Medicine, a fellow of the American Association for the Advancement of Science, and a University Professor at USC. She is currently the director of the USC/UCLA Center on Biodemography and Population Health, one of the Demography of Aging Centers supported by the U.S. National Institute on Aging. She is also the Director of the Multidisciplinary Training in Gerontology Program and the NIA-sponsored Network on Biological Risk. Dr. Crimmins is a co-investigator of the Health and Retirement Study in the U.S. Much of Dr. Crimmins’ research has focused on changes over time in health and mortality. Dr. Crimmins has been instrumental in organizing and promoting the recent integration of the measurement of biological indicators in large population surveys. She served as co-chair of a Committee for the National Academies of Sciences, Engineering, and Medicine to address why life expectancy in the U.S. is falling so far behind that of other countries. She has also co-edited several books with a focus on international aging, mortality and health expectancy: Determining Health Expectancies; Longer Life and Healthy Aging; Human Longevity, Individual Life Duration, and the Growth of the Oldest-old Population; International Handbook of Adult Mortality; Explaining Diverging Levels of Longevity in High-Income Countries; and International Differences in Mortality at Older Ages: Dimensions and Sources. She has received the Kleemeier Award for Research from the Gerontological Society of America.
Peggye Dilworth-Anderson
Peggye Dilworth-Anderson, PhD, is Professor of Health Policy and Management in the Gillings School of Global Public Health at the University of North Carolina, Chapel Hill (UNC). Dr. Dilworth-Anderson’s areas of expertise include family caregiving to dementia patients, minority aging and health, and chronic disease care and management in cultural context. Her overall research focus is on health disparities with an emphasis on building knowledge to inform, researching, translating and disseminating information on chronic disease care and management in medically underserved populations. Her current research includes collaborating with international colleagues on a project related to building community capacity to address Alzheimer’s disease and care. She is the 2010 recipient of the Ronald & Nancy Reagan Alzheimer’s Research Award for her research contributions on Alzheimer’s disease in underserved populations. Dr. Dilworth-Anderson has served on numerous boards and committees that address aging issues including the National Research Advisory Council of the Institute on Aging/NIH (2007-2011) and on the Forum on Aging, Disability & Independence of the National Academies in 2012 – 2014. She currently serves on the Global Council on Brain Health with twelve other national and international scholars and is a member of the board of directors of the Alzheimer’s Association Eastern North Carolina Chapter. Dr. Dilworth-Anderson has taught courses in aging, qualitative research methods, and most recently in translational health disparities. In addition to teaching, she has dedicated many years to mentoring graduate students, fellows, and junior and mid-career faculty. In recognition of her mentoring, she received the Minority Task Force Mentor Award in 2006 from the Gerontological Society of America and the UNC Faculty to Faculty Mentoring Award in 2012 from the Carolina Women’s Leadership Council.
XinQi Dong
XinQi Dong, MD, MPH, is the Director of Rutgers University’s Institute for Health, Health Care Policy and Aging Research and Henry Rutgers Professor of Population Health Sciences. A renowned epidemiologist and health services researcher whose research focuses on aging populations and the intersection of culture, resilience and health outcomes, Dr. Dong has been a strong advocate for advancing health issues in underrepresented communities worldwide. He previously served as Director of the Chinese Health, Aging and Policy Program and Associate Director of the Rush Institute for Healthy Aging. Dr. Dong has published extensively on the topics of violence prevention, culture and health disparities with more than 200 peer-reviewed publications. He is the editor of Elder Abuse: Research, Practice and Policy, a textbook comprising the largest collection of research, practice and policy in the field, and he serves on several editorial boards. Dr. Dong has served as senior policy and research adviser to the U.S. Department of Health and Human Services and as a commissioner for the Commission on Law and Aging of the American Bar Association. His policy and advocacy work with the Department of Justice and Centers for Disease Control and Prevention has shaped the national agenda on surveillance and preventive strategies combating the issues of violence and mental health. Dr. Dong was appointed a member of the National Academies’ Global Violence Prevention Forum and then chaired a workshop on elder abuse prevention. Dr. Dong earned a BA in biology and economics from the University of Chicago, an MD from Rush University College of Medicine and an MPH in epidemiology at the University of Illinois at Chicago. He completed his internal medicine residency and geriatric fellowship at Yale University Medical School and Yale New Haven Hospital.
Miguel Hernan
Miguel Hernán, MD, DrPH, studies causal inference methods and implements them to evaluate strategies for the treatment and prevention of disease. Together with collaborators in several countries, he designs analyses of health care databases, epidemiologic studies, and randomized trials. Dr. Hernán teaches clinical data science at the Harvard Medical School, clinical epidemiology at the Harvard-Massachusetts Institute of Technology Division of Health Sciences and Technology, and causal inference methodology at the Harvard T.H. Chan School of Public Health, where he is the Kolokotrones professor of biostatistics and epidemiology and where he has mentored dozens of doctoral students and postdoctoral fellows. His book Causal Inference, co-authored with James Robins and freely available online, is used in graduate programs throughout the world. Dr. Hernán is a fellow of the American Association for the Advancement of Science, past chair of the American Statistical Association Section on Statistics in Epidemiology, past associate editor of the Journal of the American Statistical Association and of Biometrics, associate editor of the American Journal of Epidemiology, and an editor of Epidemiology. He has served on several committees of the National Academies of Sciences, Engineering, and Medicine.
Ronald Hickman
Ronald Hickman, Jr., PhD, RN, ACNP-BC, FNAP, FAAN, is an Associate Professor and Assistant Dean for Nursing Research at Case Western Reserve University. Dr. Hickman earned a BA in biological science, MSN, and PhD in nursing science from Case Western Reserve University. In 2012, Dr. Hickman completed a career development award focused on the conduct of multidisciplinary clinical and translational research funded by the NIH National Center on Advancing Translational Science (NCATS). His research program examines biobehavioral mechanisms that influence the quality of the healthcare decision making and evaluates the efficacy of novel technology-based interventions to enhance health outcomes of patients and their family caregivers. He has conducted several clinical studies funded by grants from the American Nurses Foundation, the Robert Wood Johnson Foundation, the National Institutes of Health, National Institute on Minority Health and Health Disparities, and the National Institute of Nursing Research. In addition to his research, Dr. Hickman provides consultation on the development of technology-based interventions, workforce diversity, and strategies to reduce health inequities.
Rebecca A. Hubbard
Rebecca A. Hubbard, PhD, is an associate professor of biostatistics in the University of Pennsylvania's Perelman School of Medicine Department of Biostatistics, Epidemiology & Informatics. Dr. Hubbard's research focuses on development and application of statistical methodology for studies that use observational data from clinical medical practice. This work encompasses evaluation of screening and diagnostic test performance, methods for comparative-effectiveness studies, and health-services research. A wealth of data on healthcare utilization, performance and outcomes are available from electronic health records. However the complex observation scheme that gives rise to these data necessitates careful study design and analysis to ensure that inference is valid. Dr. Hubbard’s methodological research emphasizes development of statistical tools for such inference and has been applied to studies of cancer screening, aging and dementia, pharmacoepidemiology, women’s health and behavioral health. Dr. Hubbard received a BS (Ecology & Evolution, Summa Cum Laude) from the University Of Pittsburgh, an MSc (Epidemiology) from the University Of Edinburgh, an MSc (Applied Statistics, With Honors) from Oxford University, and a PhD (Biostatistics) from the University Of Washington.
Jason Karlawish
Jason Karlawish, MD, is a Professor of Medicine, Medical Ethics and Health Policy, and Neurology at the University of Pennsylvania and cares for patients at the Penn Memory Center, which he co-directs, and directs the Penn Program for Precision Medicine for the Brain, and the Penn Healthy Brain Research Center. With support from the National Institutes of Health, the Robert Wood Johnson Foundation and the Greenwall Foundation, he has investigated the development of Alzheimer’s disease treatments and diagnostics, biomarker-based concepts of disease, informed consent, quality of life, research and treatment decision making, and voting by persons with cognitive impairment and residents of long term care facilities. He has been an internationally recognized proponent of mobile polling, a method of bringing the vote to long term care facilities that minimizes fraud and maximizes voter rights. He is a member of the Board of Directors of the Greenwall Foundation. He was a member of the Institute of Medicine's Committee on the Public Health Dimensions of Cognitive Aging, and PCAST's subcommittee on aging and technology. He serves on AARP's Global Council on Brain Health. He has served as a consultant to Squint Metrics, a company that develops apps to assist patients and physicians in tracking and monitoring diseases. He is also the creator and producer of, a creative community to make sense of how we are going to live with Alzheimer's disease. Dr. Karlawish studied medicine at Northwestern University and trained in internal medicine and geriatric medicine at Johns Hopkins University and the University of Chicago.
Robyn Stone
Robyn I. Stone, DrPH, a noted researcher and internationally recognized authority on long-term care and aging policy, is Senior VP for Research at LeadingAge and Co-Director of the LeadingAge LTSS Center @UMass Boston. She has held senior research and policy positions in both the U.S. government and the private sector. She was a political appointee in the Clinton Administration, serving in the U.S. Department of Health and Human Services as Deputy Assistant Secretary for Disability, Aging and Long-term Care Policy and Assistant Secretary for Aging. Dr. Stone is a distinguished speaker and has been published widely in the areas of long-term care policy and quality, chronic care for the disabled, aging services workforce development, low income senior housing and family caregiving. She serves on numerous provider and non-profit boards that focus on aging issues. Dr. Stone is a fellow of the Gerontological Society of America and the National Academy of Social Insurance. She was elected to the National Academy of Medicine (formerly the Institute of Medicine) in 2014.
Jennifer L. Wolff
Jennifer L. Wolff, PhD, is the Eugene and Mildred Lipitz Professor and Director of the Roger C. Lipitz Center for Integrated Health Care. She is an expert and thought leader in research and policy relating to the care of persons with complex health needs and disabilities. She has made major contributions to increasing understanding of the role of family caregivers in the interactions of older adults with the medical community. She has been involved in the development and evaluation of numerous initiatives aimed at better supporting older adults and their family caregivers, including applied research to develop practical tools and strategies that may be readily deployed in care delivery. Her research has been published in top-ranked journals including NEJM, JAMA, Journal of the American Geriatrics Society, Social Science and Medicine, and Health Affairs. She has led projects that have been funded by the National Institute on Aging, the National Institute of Mental Health, AARP, the Jacob and Valeria Langeloth Foundation, the Milbank Memorial Fund, and Atlantic Philanthropies. Dr. Wolff is a core member of the Roger C. Lipitz Center for Integrated Health Care, the Center for Health Services and Outcomes Research, the Center on Aging and Health, and the Center on Innovative Care in Aging. She holds a joint appointment in the Johns Hopkins School of Medicine’s Division of Geriatric Medicine and Gerontology.



National Academy of Sciences Building
2101 Constitution Ave NW, Washington, DC 20418
Event Type :  

Description :   

On November 12-13, 2018, the Committee on Care Interventions for Individuals with Dementia and their Caregivers will host open sessions with the following objectives:

  • Hear from the National Institute on Aging—the sponsoring agency—on its perspective on the committee’s statement of task.
  • Receive an overview of the Agency for Healthcare Research and Quality systematic review process.
  • Receive an update from the Minnesota Evidence-Based Practice Center on their progress to-date in designing the systematic review and areas in which they request input from the National Academies committee.
  • Hear a report from the 2017 National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers, and a perspectives from a person living with dementia.
  • Discuss the draft systematic review key questions and scope.

If you would like to attend the sessions of this event that are open to the public or need more information please contact

Contact Name:  Phoenix Wilson
Contact Email:
Contact Phone:  (202) 334-3265

Supporting File(s)
Is it a Closed Session Event?
Some sessions are open and some sessions are closed

Closed Session Summary Posted After the Event

The following committee members were present at the closed sessions of the event:

Eric B. Larson
Marilyn Albert
María P. Aranda
Christopher M. Callahan
Eileen M. Crimmins
Peggye Dilworth-Anderson
XinQi Dong
Miguel Hernán
Ronald Hickman
Rebecca A. Hubbard
Jason Karlawish
Robyn I. Stone
Jennifer L. Wolff

The following topics were discussed in the closed sessions:

a) Reviewed areas of potential bias or conflict of interest according to NRC procedures,
b) Discussed scope of study and work plan,
c) Discussed AHRQ draft systematic review key questions and scope,
d) Drafted letter report text.

The following materials (written documents) were made available to the committee in the closed sessions:

Documents about the study (committee roster and contacts, committee and speaker biosketches, study charge and timeline, other general documents about the National Academies study process)
Topic refinement document from AHRQ/Minnesota EPC: Care Interventions for People With Dementia (PWD) and Their Caregivers
National research summit on care, services, and supports for persons with dementia and their caregivers: Report to the National Advisory Council on Alzheimer’s Research, Care, and Services (2018)
Identifying and supporting nonpharmacological dementia interventions ready for pragmatic trials: Results from an expert workshop (Baier et al., 2018, JAMDA)

Date of posting of Closed Session Summary:
November 26, 2018
Publication(s) resulting from the event: