As the largest generation in U.S. history—the population born in the two decades immediately following World War II—enters the age of risk for cognitive impairment, growing numbers of people will experience dementia (including Alzheimer’s disease and related dementias). By one estimate, nearly 14 million people in the United States will be living with dementia by 2060. Like other hardships, the experience of living with dementia can bring unexpected moments of intimacy, growth, and compassion, but these diseases also affect people’s capacity to work and carry out other activities and alter their relationships with loved ones, friends, and coworkers. Those who live with and care for individuals experiencing these diseases face challenges that include physical and emotional stress, difficult changes and losses in their relationships with life partners, loss of income, and interrupted connections to other activities and friends. From a societal perspective, these diseases place substantial demands on communities and on the institutions and government entities that support people living with dementia and their families, including the health care system, the providers of direct care, and others. The economic cost of these diseases in the United States has been estimated at $305 billion for 2020 and is projected to rise to $1,500 trillion by 2050.
Dementia will be a fact of life for the foreseeable future. Although a medication that effectively slows or even prevents dementia may someday be discovered and approved, dementia will not be eradicated by one or even several medications, including the recently approved drug aducanumab. Multiple diseases and causes lead to dementia, and researchers seeking pharmacological remedies are focused on the earliest stages of disease.
Those who already have dementia or will develop it in the next 10 years have lived for multiple decades and been exposed to risk and protective factors, and likely would not benefit materially from a pharmacological breakthrough.
Nevertheless, research in the social and behavioral sciences points to possibilities for preventing or slowing the development of dementia and for substantially reducing its social and economic impacts. Accordingly, the National Institute on Aging of the U.S. Department of Health and Human Services requested that the National Academies of Sciences, Engineering, and Medicine conduct a consensus study to produce a decadal survey of research in the social and behavioral sciences with the potential to mitigate the negative impacts of Alzheimer’s disease and related dementias and identify a research agenda for the coming decade.1 To carry out this study, the National Academies convened the Committee on the Decadal Survey of Behavioral and Social Science Research on Alzheimer’s Disease and Alzheimer’s Disease–Related Dementias, whose members have expertise in sociology, epidemiology, biostatistics, public health, psychology, geriatric medicine, psychiatry and neurology, bioethics, and public policy. The committee’s charge is shown in Box S-1.
The study charge focuses on research that can improve the experience of living with dementia. Therefore, this report is concerned primarily with the impacts of dementia on those for whom symptoms have become salient and their caregivers.
To carry out this study, the committee followed the approach established in previous decadal surveys by (1) assessing the needs of the communities the study was intended to benefit, and (2) surveying the landscape of potentially relevant research for ideas with the greatest promise for advancing the objective of mitigating the impacts of dementias on all of the constituencies they affect. We examined evidence on the impacts of dementia from multiple perspectives and identified research directions for each.
RISK AND PREVENTIVE FACTORS FOR DEMENTIA AND HOW THEY RELATE TO THE SOCIAL AND ECONOMIC CONDITIONS THAT AFFECT HEALTH CARE AND HEALTH OUTCOMES
A large proportion of dementia could be prevented, but rigorous causal evidence with enough precision to guide evidence translation and the development of interventions is limited for nearly every domain of prevention,
1 A decadal survey is a method for engaging members of a scholarly community to identify lines of research with the greatest potential to be of use over a 10-year period in pursuit of a particular goal. The National Academies developed this type of survey to support the planning of future research for government agencies and other entities.
including behavioral changes, socioeconomic conditions, and structural and interpersonal racism and discrimination. For example, robust evidence suggests that people who take such common-sense measures as eating a healthy diet, exercising regularly, maintaining a healthy weight, and reducing cardiovascular risk have a lower risk of dementia. Similarly, clear evidence shows that disparities in socioeconomic resources, negative social interactions (e.g., overt racism and discrimination), systemic racism, and other socioeconomic factors contribute to stark disparities in dementia risk across population groups. Research is needed to follow up on these findings so that interventions can be designed for the benefit of individuals and at the population level, and rigorously evaluated for effectiveness. High-priority research in this area would address
- the causal effects of social factors on the incidence and rate of progression of dementia;
- the effects of health-related behaviors and their management over the life course;
- modifiable drivers of racial/ethnic inequality in dementia incidence, as well as other dimensions of inequality (e.g., geography);
- the mechanisms through which socioeconomic factors influence brain health, including physiologic changes, behavioral mechanisms, and medical care pathways;
- understanding of identified risk factors that is needed to support more precise recommendations to individuals about and the development of population-level policies; and
- effective means of communicating the magnitude and degree of potential risk and protective factors to support informed decision making.
THE PERSONAL EXPERIENCE OF LIVING WITH DEMENTIA AND ISSUES ASSOCIATED WITH DIAGNOSIS, CARE, AND TREATMENT
Much of the research on interventions for people living with dementia is primarily observational or conducted using conventional rather than pragmatic trials. The committee identified the need for both qualitative and quantitative research related to the needs of people at all stages of dementia that is interdisciplinary, involving ethicists and legal experts as well as clinicians and researchers. Related is the need for improved measures that can be used in assessing outcomes relevant to persons living with dementia and their caregivers throughout the course of the disease. High-priority research in this area would address
- improved screening and diagnosis to identify persons living with dementia, including guidance for clinicians that also addresses issues related to disclosure;
- the development of guidance to support ethical and responsible decision making by and for people living with dementia;
- the development and validation of outcome measures that reflect the perspectives of people living with dementia, their family caregivers,2 and communities; and
2 The committee uses the terms “family caregivers” and “caregivers” to refer to those who provide any level of care, usually unpaid, to a person with dementia primarily because of their prior personal relationship with that person. The term here encompasses both care partners, who support people living with dementia during the early stages of disease, and those who provide more intensive direct care during later stages.
- improved design and evaluation of nonpharmacologic interventions to slow or prevent cognitive and functional decline, reduce or ameliorate behavioral and psychological symptoms, improve comfort and well-being, and adequately and equitably serve diverse populations.
THE EXPERIENCES OF FAMILY CAREGIVERS AND RESOURCES AVAILABLE TO THEM
There is evidence that many interventions to support family caregivers can provide benefit, but as in the other areas discussed above, there are also significant gaps in the existing research. Many existing studies lack the methodological rigor needed to support wide dissemination. Moreover, important aspects of the caregiving experience and its effects on both caregivers and people living with dementia have not yet been documented and studied. High-priority research in this area would address
- identification of the highest-priority needs for resources and support for family caregivers, particularly assessment of how caregivers’ needs vary across race and ethnicity, and community;
- means of identifying the assets that family caregivers bring to this role, as well as their needs for supplemental skills and training and other resources to enhance their capacity to provide care while maintaining the safety and well-being of both care recipients and caregivers;
- continued development and evaluation of interventions to support and enhance family caregiving and address the practical and logistical challenges; and
- continued progress in data collection and research methods.
HOW COMMUNITY CHARACTERISTICS AFFECT DEMENTIA RISK AND QUALITY OF LIFE FOR PEOPLE LIVING WITH DEMENTIA AND THEIR FAMILIES
There is strong evidence that community factors shape the exposures and behaviors that influence dementia risk, the way people interpret the meaning of the experience of living with the disease, their expectations for social interactions, and the availability of needed resources. Researchers have not yet fully documented the impacts on dementia of interventions to circumvent negative influences on cognitive health at the community level. At the same time, community supports are known to be key resources, and community is an important lens for understanding ways to reduce the negative impacts of dementia. Innovative approaches to the design of
communities in which people living with dementia can thrive do indeed show promise, although their application to diverse contexts and populations has yet to be systematically demonstrated. High-priority research in this area would address
- systematic analysis of the characteristics of communities that influence the risk of developing dementia and the experience of living with the disease, with particular attention to the sources of disparities in dementia incidence and disease trajectory;
- the collection of data to document the opportunities and resources available in communities both historically and currently and evaluation of their impact, with particular attention to disparities in population groups’ access to resources and including development of the infrastructure needed for data collection;
- analysis of the community characteristics needed to foster dementia friendly environments, including assessment of alternative community models that foster dementia friendly environments in communities that have different constellations of resources and serve diverse populations; and
- evaluation of innovative approaches to adapting housing, services, and supports so that persons with dementia can remain in the community and out of institutional care.
THE HEALTH CARE SYSTEM AND THE INSTITUTIONS THAT PROVIDE RESIDENTIAL LONG-TERM CARE AND HOSPICE AND PALLIATIVE CARE
People living with dementia interact with many different institutions that provide health care and social support as their dementia symptoms become more severe and they lose their ability to function independently. Many spend time living in long-term care facilities and ultimately receive such care as hospice resources at the end of life. These experiences involve relationships with numerous professionals and institutions—often a great many, over time—including neurologists, psychiatrists, geriatricians, and nurse practitioners who specialize in dementia care; social workers; and public and private entities that provide residential and end-of-life care. Each interaction may be comforting and beneficial, or may fall short of that ideal.
Highest-priority research on how persons living with dementia and their caregivers interact with and are served by the health care and social service systems would address
- how to strengthen the quality and structure of the health care provided to people living with dementia, including
- documentation of the diagnosis and care management received by persons living with dementia,
- clarification of disease trajectories,
- identification of effective methods for providing comprehensive dementia-related services,
- development and evaluation of standardized systems of coordinated care for comprehensively managing multiple comorbidities for persons with dementia, and
- identification of effective approaches for integrating care services across health care delivery and community-based organizations;
- how to strengthen the quality and structure of long-term and end-of-life care provided to people living with dementia, including
- identification of future long-term and end-of-life needs and available care,
- description and monitoring of factors that contribute to problems with nursing home quality,
- development and evaluation of alternatives to traditional nursing home facilities including home care options and innovative facility designs, and
- improved understanding of how and when persons living with dementia use palliative and hospice care options and of variations in the end-of-life care available across regions and populations; and
- how to strengthen the arrangements through which most dementia care is funded (traditional Medicare, Medicare Advantage, alternative payment models, Medicaid), including
- comparison of the effects of different financing structures on the quality of care and clinical outcomes,
- examination of ways to modify incentives in reimbursement models to optimize care and reduce unnecessary hospitalizations and other negative outcomes, and
- development and testing of approaches to integrated financing of medical and social services.
The health care and long-term care systems employ millions of individuals who care for people living with dementia and possess a wide range of experience and skills. Issues that affect the workforces in these two sectors—including shortages of qualified workers, limitations of available training and education, and national-level policies and economic trends—undoubtedly have important impacts for those affected by dementia. It was beyond the scope of this study to conduct a review of the state of the research in each of the relevant areas that would be detailed enough
to support specific conclusions about the research directions that should be given highest priority. Nevertheless, the committee regards emerging knowledge about workforce issues as a vital complement to the research directions described here.
THE ECONOMIC COSTS OF DEMENTIA TO INDIVIDUALS AND SOCIETY
Understanding the full extent of the economic impacts of dementia and how they can be reduced will be key to mitigating the overall impact of the disease on individuals and society. Both reducing unnecessary costs and increasing value—that is, achieving significant improvements in health, quality of life, and other outcomes that justify the associated costs—will bring economic benefit. High-priority research to improve understanding of the economic impact of dementia and identify ways to reduce costs without reducing quality of care would include
- assessment and quantification of the total economic impact of dementia for individuals and families, including current and future national costs;
- improved understanding of drivers of dementia-related costs; and
- estimation of the value to individuals, families, and society of innovations in prevention, diagnostics, and treatment, including pharmacologic treatments.
STRENGTHENING DATA COLLECTION AND RESEARCH METHODOLOGY
Advances in data collection and research methodology are needed to support progress in virtually every domain of dementia research. Progress toward four key methodological objectives will support a research agenda to reduce the negative impacts of dementia:
- Expansion of data infrastructure.
- Improved measurement of exposure and outcomes.
- Support for the adoption of more rigorous study designs, particularly in the realm of implementation science, so that research findings can be successfully integrated into clinical and community practices.
- Development of systematic approaches for integrating evidence from disparate studies.
Advances in these areas will be relevant to and strengthen research in every other area discussed in this report. Social and behavioral scientists from numerous specific disciplines are the natural leaders in meeting these methodological challenges.
TEN-YEAR RESEARCH PRIORITIES
Collectively, the priority research outlined above constitutes a substantial body of work that will provide the basis for powerful benefits to people living with dementia, their families and communities, and society. Recognizing that resources are finite, however, the committee identified the highest priorities from that set of research challenges to help ensure that the research undertaken in the next 10 years will contribute more than the sum of its parts. These priorities emerge from themes that can be traced across the report, and can be used to structure funding for a research agenda that addresses the full range of negative impacts of dementia and to guide decisions about the research likely to have the greatest impact in the coming decade.
CONCLUSION 9-1:3A 10-year research agenda for the behavioral and social sciences will have maximal impact in reducing the negative impacts of dementia and improving quality of life if it distributes attention and resources across five priorities:
- Improvements in the lives of people affected by dementia, including those who develop it and their families and caregivers, as well as in the social and clinical networks that surround them, through research on factors that affect the development of disease and its outcomes, promising innovative practices and new models of care, and policies that can facilitate the dissemination of interventions found to be effective.
- Rectifying of disparities across groups and geographic regions that affect who develops dementia, how the disease progresses, outcomes and quality of life, and access to health care and supportive services.
- Development of innovations with the potential to improve the quality of care and social supports for individuals and communities and to support improved quality of life (e.g., reducing financial abuse and stressors, finding relevant affordable housing and care facilities, gaining access to important services).
- Easing of the financial and economic costs of dementia to individuals, families, and society and balancing of long-term costs with long-term outcomes across the life span.
- Pursuit of advances in research capability, including study design, measurement, analysis, and evidence integration, as well as the development of data infrastructure needed to study key dementia-related topics.
In addition to these broad priorities, the committee offers guidelines for the design of an effective portfolio of research.
CONCLUSION 9-2: A 10-year research agenda will be optimally effective if it
- is coordinated to ensure that the various research topics identified in this report are addressed sufficiently without redundancy and competing initiatives;
- consistently takes into account fundamental socioeconomic factors that influence who develops dementia, access to high-quality care, and outcomes;
- includes pragmatic, implementation, and dissemination research needed to ensure that findings can be implemented effectively in clinical and community settings; and
- addresses potential policy implications that are articulated beginning in the planning stages and assessed during the course of the investigations.
CALL TO ACTION
A 10-year research agenda that meets the above objectives will require sustained leadership; integration of effort across multiple, sometimes competing domains; and the capacity to deliver research findings to individuals, communities, and health systems to change the lives of people with dementia and caregivers for the better. This research agenda defines goals and priorities for the vital task of supporting better lives for people with dementia and caregivers, but its existence alone will not be sufficient: action is needed to ensure that the United States benefits from the potential in this body of research. The committee therefore makes the following recommendation:
RECOMMENDATION 9-1: Funders of dementia-related research, including federal agencies, such as the National Institutes of Health and the Agency for Healthcare Research and Quality, along with relevant philanthropic and other organizations, such as the Patient-Centered
Outcomes Research Institute, should use guidelines for the awarding of research grants to establish incentives for
- coordination of research objectives with the research agenda priorities identified in this report to ensure that key areas are funded without undue overlap and to foster links across research efforts;
- interdisciplinary research and inclusion of stakeholders in research partnerships;
- attention to topics that have not typically been part of standard medical research but are important to those living with dementia, including isolation, financial security, and housing options;
- rigorous evaluation and implementation research needed to translate findings into programs with impact on a broad scale; and
- dissemination of research findings to policy makers.
This report documents the multifold challenges dementia is expected to bring in the coming decades, and it was written as the COVID-19 pandemic was exposing and seriously exacerbating long-standing deficiencies in the support systems for people living with dementia. The report lays out a broad research roadmap for the behavioral and social sciences over the next decade. It notes promising intervention programs that require additional confirmatory evidence. And it describes social and behavioral research that can provide the foundation for the development of programs and policies, as well as ethical safeguards that would serve the needs of all Americans affected by dementia. The committee notes that funding for the research agenda proposed in this report may require difficult choices within the federal agencies to which our recommendations are directed.
The committee’s objective was to set priorities for research aimed at reducing the negative impacts of dementia, taking into account broad societal and community-level impacts on risk and prevention and on access to care and resources, as well as developments that can improve the quality and delivery of care and improve the lives of persons with dementia and their caregivers. Scrupulous reliance on evidence is the foundation on which society can protect and improve the public health of the nation. It is our hope that by identifying these priorities for social and behavioral science research and recommending ways in which they can be pursued in a coordinated fashion, this report will help produce research that improves the lives of all those affected by dementia. By 2030, an estimated 8.5 million Americans will have Alzheimer’s disease and many more will have other forms of dementia. If the nation is to ensure that the lives of these individuals are better than those of people living with dementia in 2021, the time to act is now.
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