Ten years from now, dementia will still be affecting millions of people and their families—by one estimate, more than 130 million new diagnoses are expected worldwide by that time.1 Even if therapies are developed that can modify the course of disease, individuals who are now approaching the age when these diseases are most common have already been exposed to both risk and protective factors. It is not yet possible to circumvent the dementias that will affect this population, but it will be possible to apply research to alter the repercussions of these diseases and improve the experience of living with dementia for individuals and family members.
The committee was charged with developing a 10-year research agenda for the social and behavioral sciences to meet the goal of reducing the overall negative impact of dementia. To develop this agenda, we examined the landscape of dementia and dementia care from multiple perspectives and considered diverse types of impacts. We looked across the life span to understand the factors that affect the development and course of dementia and how people experience its symptoms. We asked those living with dementia and caregivers what would make their lives better—not just in terms of medical care but in multiple domains. We looked across many entities and features of the environment that shape the experience of dementia in the United States, from the characteristics of neighborhoods and health care systems to objectives for dementia care. We examined evidence about the
1 Alzheimer’s Association. (2021). 2021 Alzheimer’s Disease Facts and Figures. https://alzjournals.onlinelibrary.wiley.com/doi/10.1002/alz.12328
reasons for the stark disparities in the prevalence of dementia—and the way it is experienced—across neighborhoods and population groups. Chapters 2 through 8 describe what we learned about the impacts of dementia from multiple perspectives. We explored the state of the research about each of these aspects of the landscape of dementia and identified the highest-priority areas for further research that could help reduce its negative impacts. As noted in Chapter 1, in so doing we looked for
- challenges that are both common and serious for people living with dementia and their caregivers that can be addressed through research in the social and behavioral sciences;
- gaps in the research available to support meaningful developments in interventions or policies; and
- reason to believe that those gaps could be filled within a decade using data and methods that are currently or could become available.
The conclusions in Chapters 2 through 8 summarize the research directions we identified; Appendix D provides a complete list of the conclusions and detailed research directions with which each of those chapters concludes. Collectively, these conclusions and detailed research needs constitute a substantial body of work that can provide the basis for powerful benefits to people living with dementia, their families and communities, and society. The committee envisioned a world that better supports people living with dementia because of research conducted over the coming decade, and in which the development of interventions and policies is based on improved understanding and corresponds to what matters to those living with dementia. We identified research opportunities, outlined below, that are ripe for development in each of these areas.
Understanding of modifiable factors that can prevent Alzheimer’s disease and related dementias or reduce or delay their symptoms (Conclusion 2-1):
- The causal effects of social factors.
- The effects of health-related behaviors and their management over the life course.
- Modifiable drivers of racial/ethnic inequality in dementia incidence.
- The mechanisms through which socioeconomic factors influence brain health.
- Modifiable risk factors that can be the basis for precise recommendations to individuals about decision making and for population-level policies to promote brain health.
- Effective means of communicating the magnitude and degree of potential risk and protective factors to support informed decision making.
Ways to substantively improve the experience of individuals living with dementia by supporting their dignity and well-being, including balancing safety and autonomy (Conclusions 3-1 and 3-2):
- Improved screening and diagnosis, including guidance for clinicians that also addresses issues related to disclosure.
- Guidance to support ethical and responsible decision making by and for people living with dementia.
- Outcome measures that reflect the perspectives and values of people living with dementia, their family caregivers, and communities.
- 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.
Ways to substantively improve the experience of family caregivers (Conclusion 4-1):
- Identification of the highest-priority needs for resources and support for family caregivers, particularly assessment of how they vary across race, ethnicity, and community.
- Means of identifying the assets that family caregivers bring to their work, as well as their needs for supplemental skills and training.
- Innovations to support and enhance family caregiving and address practical and logistical challenges in multiple domains, including appropriate use of technology to coordinate caregiving, extend independence, and promote comfort.
- Continued progress in data collection and research methods.
Ways to facilitate the development of communities that support people living with dementia and caregivers, allow those with dementia to live independently for as long as possible, maintain social connections, and mitigate the negative effects of past and current socioeconomic and environmental stressors (Conclusion 5-1):
- 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.
- Collection of data to document the opportunities and resources available in communities and evaluation of their impact, with particular attention to disparities in population groups’ access to resources.
- Analysis of the community characteristics needed to foster dementia friendly environments, including assessment of alternative community models and ways to serve diverse populations.
- 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.
Ways to substantially strengthen the quality and structure of health care and long-term care (Conclusions 6-1 and 6-2):
- Documentation of the diagnosis and care management received by persons living with dementia from their primary care providers.
- Clarification of disease trajectories to help health systems plan care for persons living with dementia.
- Identification of effective methods for providing dementia-related services throughout the disease trajectory.
- Development and evaluation of standardized systems of coordinated care for comprehensively managing multiple comorbidities for persons with dementia.
- Identification of effective approaches for integrating and coordinating care services across health care delivery and community-based organizations.
- Identification of future long-term and end-of-life needs and available care for persons living with dementia.
- Description and monitoring of factors that contribute to problems with nursing home quality.
- Development and evaluation of alternatives to traditional nursing home facilities.
- Improved understanding of how and when patients use palliative and hospice care and variations in available end-of-life care across regions and populations.
Ways to substantially strengthen the arrangements through which most dementia care is funded—traditional Medicare, Medicare Advantage, alternative payment models, and Medicaid (Conclusion 6-3):
- 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.
- Development and testing of approaches to integrated financing of medical and social services.
Ways to improve understanding of the economic impact of dementia and identify high value, cost-effective interventions (Conclusion 7-1):
- 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.
- Estimation of the value to individuals, families, and society of innovations in prevention; diagnostics; and treatment, including pharmacologic treatments.
Taking advantage of all of these research opportunities will depend on advances in research methodology; the committee identified goals for moving forward in this area as well.
Key methodological objectives to support needed research (Conclusion 8-1):
- Expansion of data infrastructure and improved data collection.
- Improved measurement of exposures 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.
- Improved inclusion and representation among both research participants and researchers.
These conclusions are the foundation for a research agenda that establishes clear priorities for the coming decade. Recognizing that resources are finite, the committee focused on critical areas of study to ensure that research undertaken in the next 10 years will contribute more than the sum of its parts. These priorities emerged from themes laid out throughout this 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: A 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, we offer guidelines for the design of an effective portfolio of research.
TABLE 9-1 Priorities for a 10-Year Research Agenda
|Research Priority||Research Conclusions|
|1: Improving the Lives of People Touched by Dementia||2-1|
|2: Rectifying Inequities and Disparities||2-1|
|3: Developing Innovations||3-1|
|4: Easing and Balancing Costs||6-3|
|5: Pursuing Advances in Research Capability||2-1|
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.
A 10-year research agenda that meets these 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 that bring meaningful change in the lives of people with dementia and their caregivers. Sustained funding, creativity, and collaboration are essential to the success of a project of this scope and difficulty. Alzheimer’s disease and related dementias are common, fatal illnesses. Millions of Americans face the consequences of the disease either for themselves or their loved ones. The illness itself creates suffering, but there are also significant negative impacts from modifiable factors, many of which are socially determined. Much more can be done within the social and behavioral sciences to identify and mitigate those factors. 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. To this end, the committee 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 has documented the multifold challenges dementia is expected to bring in the coming decades. It was written as the COVID-19 pandemic was both exposing and exacerbating long-standing deficiencies in the support system for people living with dementia. That reality has
highlighted not only the vulnerability of these individuals but also the critical importance of research and policy in shaping the contexts and circumstances in which they and their caregivers live.
Just as this report was going to press, the U.S. Food and Drug Administration (FDA) made the controversial decision to approve aducanumab for the treatment of dementia. Many people living with dementia and advocates greeted the decision with joy, hoping that the drug will meet a desperate need. Many others, especially in the scientific community, objected to the agency’s choice to disregard the near-unanimous advice of its advisory panel, which found that the data analysis was flawed and did not demonstrate that the benefits of the drug outweigh its risks. Advocates for aducanumab argue that it showed modest benefit for a subgroup of trial participants. While trial participants were limited to those with mild cognitive impairment (MCI) and early-stage Alzheimer’s disease (and included less than one-fourth minority participants), the FDA has labeled the drug for “treatment of Alzheimer’s disease.” In addition to the concern that any benefit to mildly impaired individuals such as those included in the trials is likely to be modest, it appears unlikely that the millions of people in the United States today who are living with moderate to severe Alzheimer’s disease and other forms of dementia can expect any benefit from aducanumab.
The consequences of the FDA’s decision are difficult to predict, but it will immediately present clinicians, patients, insurers, policy makers, and others with challenging decisions. Many members of the public might assume that a new drug for Alzheimer’s disease will sweep away the problems of people living with dementia. On the contrary, this new treatment will not diminish the pressing need for the research described in this report. Indeed, the FDA’s action illustrates many of the research challenges and needs facing the field of dementia research discussed in this report, and could affect responses to the research agenda we have laid out.
Moreover, complex policy issues are raised by the high cost of aducanumab. As discussed in Chapter 7, the cost of the drug itself, approximately $56,000 per year per patient, could reach as much as $112 billion per year and additional costs for delivery of the drug—including infusion services, scans, specialists, and equipment—could add tens of thousands more per eligible patient.2 The desire to receive this drug will likely create increased demand for early diagnosis and associated testing, which may have additional benefits but will also increase costs overall. The bulk of
2 Robbins, R., and Belluck, P. (2021, June 10). Alzheimer’s drug is bonanza for Biogen, most likely at taxpayer expense. New York Times. https://www.nytimes.com/2021/06/08/business/aducanumab-alzheimers-cost.html
these costs will be borne by Medicare, depending on insurance-coverage decisions and how widely aducanumab is prescribed.3
While the costs of aducanumab may affect all Medicare enrollees, any benefits of the medication would likely accrue only to those with MCI or mild dementia. The rapidly growing and diverse population living with dementia will continue to require support across the broad range of domains covered in this report. What effect will the demand for this level of expenditure have on resources—already stretched thin—available to support the broader group of individuals and communities and to develop and implement interventions to reduce dementia risk across the life span? How will states, health plans, and health care systems balance investments in care programs known to be effective for many while also responding to high demand for a costly drug intended to benefit a smaller group?
The approval process for this drug raises additional policy questions, highlighting the need for a sound and ethical drug approval process that evaluates the appropriate role of scientific evidence, advocacy, economic interests, and politics. Social and behavioral science research can help improve safeguards to provide Americans with access to effective and safe medications.
Roll-out of this drug also will highlight the inequities in access to medical care, insurance coverage, and other supports discussed in this report. Demand for aducanumab will further emphasize inequities in access for people living in rural areas, in socioeconomically disadvantaged circumstances, and in racial/ethnic minority communities, even as relatively few members of these populations participated in the clinical trials assessing the drug’s risks and benefits. Out-of-pocket costs are likely to be significant because of high deductible amounts and uncovered services, further disadvantaging lower-income populations. Regardless of the fundamental questions about the drug’s efficacy, selective access to such an expensive drug will underscore the harsh inequities in the current system of care.
Although the approval of aducanumab has complicated the dementia landscape, it has not changed the need for a broad research roadmap for the behavioral and social sciences over the next decade to support those living with dementia and caregivers. This report notes promising intervention programs that require additional confirmatory evidence. 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. And it must
3 Cubanski, J., and Neuman, T. (2021, June 10). FDA’s approval of Biogen’s new Alzheimer’s drug has huge cost implications for Medicare and beneficiaries. Kaiser Family Foundation. https://www.kff.org/medicare/issue-brief/fdas-approval-of-biogens-new-alzheimers-drug-has-huge-cost-implications-for-medicare-and-beneficiaries
be understood that funding for the research agenda proposed in this report may require difficult choices within the federal agencies and others to whom the committee’s 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 making recommendations for how they can be pursued in a coordinated fashion, this report will help produce research that improves the lives of everyone 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 their lives are better than those of people living with dementia in 2021, the time to act is now.
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