MEETING THE CHALLENGE OF
CARING FOR PERSONS LIVING
WITH DEMENTIA AND THEIR CARE
PARTNERS AND CAREGIVERS
A WAY FORWARD
Eric B. Larson and Clare Stroud, Editors
Committee on Care Interventions for
Individuals with Dementia and Their Caregivers
Board on Health Sciences Policy
Board on Health Care Services
Health and Medicine Division
A Consensus Study Report of
THE NATIONAL ACADEMIES PRESS
Washington, DC
www.nap.edu
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This activity was supported by a contract between the National Academy of Sciences and the National Institute on Aging. This project was funded in whole or in part with federal funds from the National Institute on Aging, National Institutes of Health, U.S. Department of Health and Human Services, under Contract No. HHSN263201800029I. 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: 978-0-309-15429-1
International Standard Book Number-10: 0-309-15429-4
Digital Object Identifier: https://doi.org/10.17226/26026
Library of Congress Control Number: 2021932470
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Copyright 2021 by the National Academy of Sciences. All rights reserved.
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Cover credit: Original art reproduced with permission from Lenny Larson, who is living with dementia in Seattle, Washington.
Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2021. Meeting the challenge of caring for persons living with dementia and their care partners and caregivers: A way forward. Washington, DC: The National Academies Press. https://doi.org/10.17226/26026.
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COMMITTEE ON CARE INTERVENTIONS FOR INDIVIDUALS WITH DEMENTIA AND THEIR CAREGIVERS
ERIC B. LARSON (Chair), Senior Investigator, Kaiser Permanente Washington Health Research Institute
MARILYN ALBERT, Professor of Neurology and Director, Division of Cognitive Neuroscience, Johns Hopkins University School of Medicine
MARÍA P. ARANDA, Associate Professor, Suzanne Dworak-Peck School of Social Work; Executive Director, Edward R. Roybal Institute on Aging, University of Southern California
CHRISTOPHER M. CALLAHAN, Chief Research and Development Officer, Eskenazi Health; Professor of Medicine, Indiana University School of Medicine
EILEEN M. CRIMMINS, AARP Professor of Gerontology and University Professor, Leonard Davis School of Gerontology, University of Southern California
PEGGYE DILWORTH-ANDERSON, Professor of Health Policy and Management, Gillings School of Global Public Health, University of North Carolina at Chapel Hill
XINQI DONG, Henry Rutgers Distinguished Professor of Population Health Science; Director, Institute for Health, Health Care Policy and Aging Research, Rutgers University
MIGUEL HERNÁN, Kolokotrones Professor of Biostatistics and Epidemiology, Harvard T.H. Chan School of Public Health
RONALD HICKMAN, JR., Associate Professor and Assistant Dean for Nursing Research, Frances Payne Bolton School of Nursing, Case Western Reserve University
HELEN HOVDESVEN, Co-Chair, Patient Family Advisory Council, Johns Hopkins Memory and Alzheimer’s Treatment Center
REBECCA A. HUBBARD, Professor of Biostatistics, Department of Biostatistics, Epidemiology, & Informatics, University of Pennsylvania Perelman School of Medicine
JASON KARLAWISH, Professor of Medicine, Medical Ethics and Health Policy, and Neurology, University of Pennsylvania Perelman School of Medicine
ROBYN I. STONE, Senior Vice President for Research, LeadingAge
JENNIFER L. WOLFF, Eugene and Mildred Lipitz Professor; Director, Roger C. Lipitz Center for Integrated Health Care, Johns Hopkins Bloomberg School of Public Health
Advisors to the Committee
EVELYN FAVORS, care partner/caregiver, Washington, DC
CYNTHIA HULING HUMMEL, living with dementia, Elmira, New York
MARIE MARTINEZ ISRAELITE, care partner/caregiver, Chevy Chase, Maryland
RONALD LOUIE, care partner/caregiver, Seattle, Washington
KAREN LOVE, Dementia Action Alliance
JANET MICHEL, care partner/caregiver, Havre de Grace, Maryland
JOHN RICHARD PAGAN, living with dementia, Woodbridge, Virginia
BRIAN VAN BUREN, living with dementia, Charlotte, North Carolina
Study Staff
CLARE STROUD, Study Director
AUTUMN DOWNEY, Senior Program Officer
SHEENA POSEY NORRIS, Program Officer
ANDREW MARCH, Research Associate
PHOENIX WILSON, Senior Program Assistant (until October 2020)
KIMBERLY SUTTON, Senior Program Assistant (from October 2020)
BARDIA MASSOUDKHAN, Senior Finance Business Partner (until September 2020)
CHRISTIE BELL, Finance Business Partner (from October 2020)
ANDREW M. POPE, Senior Director, Board on Health Sciences Policy
SHARYL NASS, Senior Director, Board on Health Care Services
Consultants
RONA BRIERE, Senior Editor, Briere Associates, Inc.
THERESA WIZEMANN, Science Writer, Wizemann Scientific Communications, LLC
REVIEWERS
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:
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 ENRIQUETA BOND, Burroughs Wellcome Fund and QE Philanthropic Advisors, LLC, and DAN G. BLAZER, Duke University Medical Center. 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.
3 COMPLEXITY OF SYSTEMS FOR DEMENTIA CARE, SERVICES, AND SUPPORTS
Complexity of Dementia Care Interventions and Implications for Assessing the Evidence
4 MAKING DECISIONS ABOUT IMPLEMENTATION
Applying Implementation Science
Understanding Demand: Stakeholder Perspectives on Decision Making
5 ASSESSING THE CURRENT STATE OF EVIDENCE
Improving and Expanding the Evidence Base for Dementia Care Interventions: Gaps and Opportunities
6 A BLUEPRINT FOR FUTURE RESEARCH
Prioritizing Inclusive Research
Assessing Real-World Effectiveness
A Agency for Healthcare Research and Quality Systematic Review and Inclusion Criteria
PROLOGUE1
Cynthia Huling Hummel was diagnosed with amnestic mild cognitive impairment due to Alzheimer’s disease in 2011. Her mother and uncle both died from Alzheimer’s, and her grandmother had dementia. “The diagnosis changed my life,” she said. She gave up her ministry because “I couldn’t remember my parishioners or the experiences that we had shared together.” She expressed frustration that it took 8 years and many visits to doctors to ultimately arrive at her diagnosis, after which she was sent off without any useful guidance.
Huling Hummel found that few programs were designed for persons navigating their diagnosis alone, and many services were unavailable to her as an individual without a care partner. “To me, that’s not only demeaning, it doesn’t recognize the fact that we’re all different with our abilities,” she said. Charting her own path, Huling Hummel built her own “circles of support” and began to focus on social interaction, spiritual support, and engaging in the arts, as well as exercise, healthy eating, and proper sleep.
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1 The vignettes presented here are from six persons living with dementia, care partners, and caregivers who spoke with the committee during open sessions in April and May 2020. They provided written permission to include their stories, quotes, and names. Many of the persons quoted here also advised the committee during the report writing phase, alongside several other individuals acknowledged in the report’s front matter. While their stories are not intended to be representative of all experiences and views of persons living with dementia, care partners, and caregivers, their messages illustrate themes that underlie the body of research on dementia care and motivate the future directions recommended in this report, including urgency, complexity, diversity, individuality and personhood, community, love, and the importance of living life and finding joy.
After traveling this “lonely road,” Huling Hummel felt called to work toward reducing the stigma associated with dementia, and to help others navigate the available supports, care, and services and “continue a life of purpose and joy.” She emphasized that many persons living with dementia find music, art, and dance programs to be valuable resources that enhance their quality of life, and she encouraged the committee to consider biosocial and spiritual interventions and resources in its review.
John Richard (JR) Pagan lives with Lewy body dementia and autonomic dysfunction. Diagnosed about 7 years ago, he can no longer work, and he relies on his parents as care partners. Pagan pointed out that because of his age, he is not eligible for Medicare or Social Security retirement benefits. He observed that many studies of interventions focus on older people and those with more advanced disease, and he highlighted the lack of research attention to the needs of younger persons living with dementia and their care partners.
Still, Pagan is moving forward with his life, and he emphasized that psychotherapy has been an essential element of his ability to deal with the diagnosis of a progressive, terminal illness. “My therapist helped me to realize I’m living. I’m living today. I’m living tomorrow. Get out there and live life.” As a moderator of a Lewy body dementia support group, Pagan has observed that “those of us that are having counseling, we’re more resilient, we’re more positive about our future.” He noted that many people cannot access therapy because of cost, inability to travel to appointments, or lack of telehealth capability, and that those who are not developing resilience often struggle with severe depression, high anxiety, and suicidality. “These are very real issues,” he said. Although research and evidence may be lacking in certain areas, Pagan hoped the committee would consider that “we are the lived experience of what is working.”
Brian Van Buren is the third generation in his family to have Alzheimer’s, having lost his mother, aunt, and both grandmothers to the disease. His own journey began 5 years ago when he was diagnosed with early-onset Alzheimer’s disease. He described the experience as, “my doctor gave me the diagnosis, sent me home, basically to die.” Van Buren has since become an active advocate. He served on the Alzheimer’s Association Early-Stage Advisory Group, is involved with his North Carolina chapter of the Alzheimer’s Association, and is an advisory board member of the Dementia Action Alliance. His advocacy work helped him realize that “if you hit a bump in the road you have two choices. You can either die or you can do something about it.” Besides his advocacy work, he enjoys cooking and is an avid video streaming service fan.
Van Buren was a caregiver for his mother until her death 2 years ago at age 90. At one point, he cared for both her and his aunt, which he described
as a personal and financial strain. He noted that many people quit jobs to care for family members at home because the cost of care facilities is prohibitive, adding that this can be a particular struggle for many African American families as they are acculturated to care for family members at home. Another cultural norm within African American families, he said, is not sharing that a loved one has Alzheimer’s because of the shame associated with the disease.
Van Buren currently lives alone and does not have a caregiver. Instead, he has built a network of partners to help him navigate living with dementia, including a psychologist, a neurologist, a life coach, priests, a speech therapist, and others. “I kind of resent being told that I needed a caregiver,” he said, “because that doesn’t allow me to participate in my journey.”
Marie Martinez Israelite once again became the caregiver for her mother after the COVID-19 pandemic caused her to move her mother out of an assisted living community. Her mother displayed behavioral and cognitive symptoms of dementia for about a decade and was diagnosed with Alzheimer’s 4 years ago. Martinez Israelite, like many in the “sandwich generation,” is balancing caregiving with her own work and family responsibilities. She added that it is common in communities of color for a grandparent living with dementia to reside long-term with family and observed that cultural dimensions of caregiving are generally not addressed in studies. She struggles to provide stimulating activities and social interaction to replace the activities her mother benefited from in assisted living and said, “I would really welcome any research that explores the best interventions and supports for families like mine.”
Martinez Israelite expressed disappointment at the lack of conclusive evidence across the literature on dementia care interventions. She shared that she has experienced an overall improvement in her quality of life, including reduced distress, depression, and anxiety, from participating in a peer-to-peer support group. There is such great demand for these groups that she waited months before one had an opening for her to join. “I think of this twice monthly group as a lifeline,” Martinez Israelite said. She also emphasized that exercise has been “critical to my mental health and my ability to muster the energy and coping skills necessary to help my mom effectively. People living with dementia and their families … need multidimensional supports and tools to help cope with the medical and psychological challenges that we all encounter on this journey,” she said.
Geraldine Woolfolk’s professional achievements include conducting classes in music and English as a Second Language (ESL) in diverse older adult settings as an adult education teacher. In 1985 she helped lead the
development of the first adult day social care program in the Oakland/East Bay region, which aimed to deliver extensive services to people living with dementia and provide respite for their caregivers. In the early 1990s, Woolfolk began caring for her mother, who developed dementia following a paralyzing stroke. Then, in the late 1990s, she found herself also caring for her husband, who was diagnosed with early-stage Alzheimer’s disease. Her husband went from helping her care for her mother, assisting in music classes, and being a treasured volunteer at the day programs she helped create to becoming a program client himself. In 2007, his growing multifaceted needs ultimately led to her placing him in a 48-bed care facility that was designed to exclusively serve people with dementia. She was extremely involved in his care and gave strong support to the medical and administrative staff in that specialized setting. Her husband passed away in 2012.
Woolfolk’s professional and personal experiences continue to drive her passion for advocacy and for developing solutions to “help growing numbers of people of all generations who have to deal with the reality of either living with this condition or of caring for someone who does.” Even with her professional background and wide network, Woolfolk said she still found it challenging to get information about comprehensive services in the community. More than two decades after her personal journey began, she finds that people today are still facing many of the same frustrations in getting information and caring for someone with dementia. She stressed that research needs to be translated into the development of relevant and seamless systems for providing practical information that can be used to support individuals and families that feel as if they are “swimming in the middle of the ocean with … no life rafts.” The number of people living with dementia is steadily growing, she said. “We have to do this.… We have to find a way to help them!”
Janet Michel is the caregiver for her husband, Kevin, who was diagnosed 10 years ago with mild cognitive impairment and more recently with Alzheimer’s disease. Michel highlighted the value of disease education to persons living with dementia and their caregivers. “I need a lot of help dealing with nitty gritty things like bathing, giving meds, keeping my husband safe,” Michel said. After Kevin’s diagnosis, the couple joined the Johns Hopkins Patient and Family Advisory Council, where they began to learn about his disease, network, and attend conferences, which she found particularly helpful. “The more you know, the better caregiver you can be,” she said. Being social and keeping active are also important to the couple, and Michel said it is helpful to understand that “others are going through the same thing that you are, in different ways.” They joined an Alzheimer’s support group and attend such activities as memory cafés, outings, and caregiver meetings. They also enjoy activities at the senior center, including
dance classes, and Michel emphasized the benefits of music therapy. Unfortunately, the COVID-19 pandemic has disrupted many of these activities. Having a primary care provider who is knowledgeable about Alzheimer’s disease and resources and who listens to both the patient and the caregiver is especially important when dealing with dementia, Michel said. Another need is respite care for caregivers, which can include other family caregivers, in-house care, adult day centers, and facility-based care for longer respite periods.
Overall, Michel said that “caregivers need down-to-earth, simple strategies that are available either in their home or close to their home,” and she highlighted the importance of these being free or reimbursable. “We need to connect with people who are empathetic to our situation and who will help to lighten our burden physically, financially, and emotionally,” she said. She urged the committee to remember that “it doesn’t have to be perfect, but it really has to be soon.”
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PREFACE
At a time when unprecedented numbers of people are enjoying more years of life, this report of the National Academies of Sciences, Engineering, and Medicine describing a way forward for meeting the challenges of persons living with dementia and their care partners and caregivers could not be more timely and welcome. A previous National Academies study addressed the evidence on interventions to prevent or slow cognitive decline and dementia. The committee that conducted the present study was charged with reporting on evidence regarding interventions aimed at improving care for persons living with dementia and their care partners and caregivers. Both of these reports emanated from a widely shared desire to avoid dreading living to old age rather than approaching a long life as a reward for a life well lived.
In the waning decades of the 20th century, when the research world “discovered” late-life Alzheimer’s disease and the importance of research to understand and address it, this developing field also recognized the need for quality improvement in caring for persons living with dementia, as well as their care partners and caregivers. Early advances led to findings that essentially helped reduce harm caused by unfortunately common practices in the care of persons with late-stage dementia. Examples included use of mechanical restraining devices (as exemplified by so-called “Geri-chairs”) and chemical restraints, such as harmful overuse of antipsychotics. Today, Geri-chairs are virtually outlawed, and a recent report of the Lancet Commission documents declining use of antipsychotics. Likewise, harmful practices designed to sustain life, such as the use of feeding tubes and some other forced-feeding techniques, have declined significantly. Yet, while these
changes represent progress, they can best be viewed as harm reduction due to existing practices.
While acknowledging the continuing need to reduce harm, a centrally important issue is how to move forward to focus on doing good and improving well-being. This report—sponsored by the National Institute on Aging (NIA) and based on a systematic review on the effectiveness of dementia care programs conducted under the auspices of the Agency for Healthcare Research and Quality (AHRQ)—addresses this issue of how to go beyond controlling behavior and addressing administrative regulations to focus on personhood and improving the well-being of both persons who develop dementia and their care partners and caregivers.
From the outset of this study, the committee members emphasized the importance of recognizing the unique disability—cognitive impairment—that characterizes those living with dementia, and of providing care aimed not just at accommodating that disability but also supporting whole-person care. This type of care is almost always complex and evolving. It must be offered in a way that maintains personhood, is guided by a focus on well-being, and considers other health conditions often seen in persons living with dementia. To better incorporate these principles into this study, the committee solicited substantial input throughout the study from persons living with dementia, care partners and caregivers, and advocacy groups, and this input was important in determining the ultimate content of the report. Also foundational to our efforts and this report are the guiding principles and core components of care detailed in Chapter 2.
The AHRQ systematic review on which this report is largely based identified thousands of published reports, many of which were rejected because they did not meet the review criteria. From this stringent review, two programs stood out: collaborative care programs and the REACH (Resources for Enhancing Alzheimer’s Caregiver Health) trials. Collaborative care programs coordinate and integrate into ongoing primary care community resources and behavioral and mental health care. These programs can be seen as recognizing the complexity of caring for (mostly older) persons with dementia and of the needs of those providing that care. They recognize further that care needs evolve, and that the care provided can become chaotic and, in some cases, not serve the well-being of those who receive it. The REACH trials address the importance of providing care partners and caregivers with the knowledge, skills, and access to resources they need to promote their own well-being as well as that of the persons living with dementia for whom they care.
The committee was disappointed that the AHRQ systematic review did not uncover a stronger, more convincing evidence base. However, we want to highlight the many positive changes detailed in this report, including the shift in focus from avoiding harm to promoting well-being; recognition of
the importance of conducting good research studies with an emphasis on rigor and generalizability; the development of collaborations; and, notably, incorporation of the perspectives of those experiencing dementia and their care partners and caregivers.
The last chapter of this report emphasizes the many opportunities for research and the implementation of its results to chart a way forward toward continued improvement in care that promotes the well-being of persons living with dementia and their care partners and caregivers. These opportunities include a recent increase in funding for such programs as the NIA IMbedded Pragmatic Alzheimer’s disease and related dementias Clinical Trials (IMPACT) Collaboratory for embedded pragmatic trials, as well as promising areas for future research and implementation of proven interventions. We also note that during the committee’s work, the COVID-19 pandemic disrupted the lives of all, but disproportionately those experiencing dementia and their care partners and caregivers. Just as every crisis contains an opportunity, the remarkable speed at which public science operated to develop vaccines and treatments, fueled by rapid increased funding for research and development, demonstrates just how valuable scientific research can be in advancing personal and public health. Together with strong support for public science, the findings identified in this report outline a way forward that will enable better care, and especially care that promotes the overall well-being of persons living with dementia and their care partners and caregivers. These ideas can serve as the basis for creating learning communities within care settings and society at large that will promote the notion that aging to late life is a reward rather than something to be dreaded.
This report resulted from the skill, expertise, and wisdom of a group of hard-working committee members, an able and supportive National Academies staff, and the input of diverse and dedicated stakeholders who offered their time and perspectives to the committee throughout this study. Thanks are extended to all.
Eric B. Larson, Chair
Committee on Care Interventions for Individuals with Dementia and Their Caregivers
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ACKNOWLEDGMENTS
The committee would like to acknowledge and thank the study sponsor—the National Institute on Aging, and particularly Marie A. Bernard, Elena Fazio, Richard Hodes, Melinda Kelley, and Lis Nielsen—for their leadership in the development of this project. The committee gratefully recognizes and thanks Mary Butler, Joseph Gaugler, and the many others at the Minnesota Evidence-based Practice Center who worked on the preparation of the extensive Agency for Healthcare Research and Quality (AHRQ) systematic review that formed the primary evidence base used by the committee. The committee also thanks Kim Wittenberg and colleagues at AHRQ for their role in overseeing the systematic review.
The committee wishes to express its particular gratitude to the persons living with dementia, care partners, and caregivers who graciously shared their experiences, powerful thoughts, and advice with the committee, including Mary Radnofsky, who spoke at the committee’s first meeting, and individuals who spoke with and advised the committee during the second phase of its work: Evelyn Favors, Cynthia Huling Hummel, Ronald Louie, Karen Love, Marie Martinez Israelite, Janet Michel, John Richard Pagan, Brian Van Buren, and Geraldine Woolfolk.
The committee also wishes to thank the many other individuals who gave presentations and participated in discussions with the committee, including Patrick Courneya (HealthPartners), Lynn Feinberg (AARP), David Gifford (American Health Care Association), Laura Gitlin (Drexel University), J. Neil Henderson (University of Minnesota), Kathleen Kelly (Family Caregiving Alliance), Shari Ling (Centers for Medicare & Medicaid Services), Douglas Pace (Alzheimer’s Association), Lewis Sandy
(UnitedHealth Group), Richard Schulz (University of Pittsburgh), Melissa Simon (Northwestern University), Linda Teri (University of Washington), and Jennifer Weuve (Boston University).
Finally, the committee would like to express its gratitude to the National Academies staff who worked on the study: Clare Stroud, Autumn Downey, Sheena Posey Norris, Andrew March, Phoenix Wilson, and Kimberly Sutton. The committee is also grateful for the contributions of Theresa Wizemann, science writer; Rona Briere, editor; and Anne Marie Houppert and Maya Thomas of the National Academies Research Center for their assistance with fact checking.
