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Suggested Citation:"Appendix D: Complete Research Agenda." National Academies of Sciences, Engineering, and Medicine. 2021. Reducing the Impact of Dementia in America: A Decadal Survey of the Behavioral and Social Sciences. Washington, DC: The National Academies Press. doi: 10.17226/26175.
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Appendix D

Complete Research Agenda

This appendix contains the complete text of the committee’s conclusions, research directions, and recommendation, by chapter.

CHAPTER 2: PREVENTION AND PROTECTIVE FACTORS

CONCLUSION 2-1: For health care and public health professionals to take advantage of modifiable factors to prevent Alzheimer’s disease and related dementias or reduce or delay their symptoms, research is needed in six broad areas:

  1. The causal effects of social factors on the incidence and rate of progression of dementia, including factors from multiple domains (socioeconomic resources, social network, structural drivers of exposure); at multiple levels (individual, family, and community); and at multiple life-course periods (e.g., childhood, early to mid-adulthood, old age).
  2. The effects of health-related behaviors and their management over the life course.
  3. Modifiable drivers of racial/ethnic inequality in dementia incidence, as well as other dimensions of inequality (e.g., geography).
  4. The mechanisms through which socioeconomic factors influence brain health, including physiologic changes, behavioral mechanisms, and medical care pathways.
  5. Detailed understanding of identified risk factors to support more precise recommendations to individuals about decision making and inform population-level policies for altering social contexts,
Suggested Citation:"Appendix D: Complete Research Agenda." National Academies of Sciences, Engineering, and Medicine. 2021. Reducing the Impact of Dementia in America: A Decadal Survey of the Behavioral and Social Sciences. Washington, DC: The National Academies Press. doi: 10.17226/26175.
×
  1. modifying the environment, or changing social policies/systems to promote brain health.
  2. Effective means of communicating the magnitude and degree of potential risk and protective factors to support informed decision making.

TABLE 2-1 Detailed Research Needs

1 and 2: Causal Effects of Social Factors and Health-Related Behaviors Over the Life Course
  • Identification of causal social and behavioral risk factors versus those that are attributable to noncausal structures; understanding of the influence of confounding reverse causation and selection bias on apparent associations between established risk factors and dementia
  • Identification of specific dimensions of complex social exposures or behaviors that are relevant to dementia risk, such as aspects of education (e.g., attainment, quality, context), social support (instrumental, emotional, informational), or physical activity (aerobic vs. strength, duration, intensity), as well as of when in the life span they must be modified to have an effect
  • Studies of the extent to which the influence of socioeconomic resources or behaviors is dependent on context and capacity to utilize a resource
  • Research to improve understanding of how dementia develops across the life span and at what age the first behavioral or other manifestations emerge
  • Identification of study designs that can be used to evaluate alternative possible explanations for observational associations
  • Identification of the mediators/mechanisms linking social factors and dementia risk, in particular, mechanisms that might be modified
  • Where feasible, use of randomized controlled trial (RCT) methodology in the study of behavior change and follow-up for dementia and related outcomes, ensuring that the methodology is sufficiently powered such that it involves large sample sizes, longitudinal interventions, and extended follow-up periods necessary to examine cognitive decline
3: Inequality in Dementia
  • Research on how interlocking systems of structural racism create disparities in dementia risk
  • Study of how the risk factors evaluated in typical research samples operate differentially in underrepresented groups
  • Examination of sources of resilience that reduce risk in individuals exposed to disproportionate, racially stratified risk factors
Suggested Citation:"Appendix D: Complete Research Agenda." National Academies of Sciences, Engineering, and Medicine. 2021. Reducing the Impact of Dementia in America: A Decadal Survey of the Behavioral and Social Sciences. Washington, DC: The National Academies Press. doi: 10.17226/26175.
×
  • Exploration of the effects of individual, interpersonal discrimination on dementia risk and the mechanisms through which those effects may occur
  • Assessment of how promising interventions to delay or prevent dementia may affect disparities
  • Monitoring trends and progress in reducing disparities in dementia incidence, care, and outcomes
4: Mechanisms Through Which Socioeconomic Factors Operate
  • Study of the physiologic changes, behavioral patterns, social resources, and medical care mechanisms underlying connections between socioeconomic factors and dementia risk
5: Interventions Involving Changes in Policies, Systems, or Individual Behaviors
  • Development and improvement of interventions to modify identified risk factors and reduce both the overall population incidence of dementia and disparities in its incidence and outcomes
  • Identification of critical elements of preventive factors that can be translated into policy interventions
  • Exploration of ways to redesign structural and environmental elements that shape the behavioral patterns of individuals (e.g., to improve access to exercise and healthy food)
  • Identification of the opportunity costs of proposed interventions
6: Effective Means of Communicating About Risk and Protective Factors
  • Research on the tailoring of communication about the quality of evidence regarding suspected risk factors to different communities to help individuals make informed decisions

CHAPTER 3: IMPROVING OUTCOMES FOR INDIVIDUALS LIVING WITH DEMENTIA

CONCLUSION 3-1: Research in the following areas related to diagnosis and decision-making support has the potential to substantively improve the experience of individuals living with dementia by supporting their dignity and well-being:

  • Improved screening and diagnosis to identify persons living with dementia, including guidance for clinicians that also addresses issues related to disclosure.
  • Development of guidance to support ethical and responsible decision making by and for people living with dementia.
Suggested Citation:"Appendix D: Complete Research Agenda." National Academies of Sciences, Engineering, and Medicine. 2021. Reducing the Impact of Dementia in America: A Decadal Survey of the Behavioral and Social Sciences. Washington, DC: The National Academies Press. doi: 10.17226/26175.
×

TABLE 3-3 Detailed Research Needs: Diagnosis and Decision-Making Support

1: Improved Screening and Diagnosis
  • Social science research addressing the use of biomarkers, including accuracy in unselected populations, clinical utility, and the positive and negative implications of disclosure to patients and families.
  • Studies of screening, including the comparative effectiveness of different approaches; evidence-based guidance on whom and when to screen; and improved accuracy of screening approaches, particularly for minority and less-educated populations.
  • Improved coordination of resources for patients once diagnosed, including medical care, information, social supports, and community resources.
  • Public education strategies to heighten awareness of impaired cognition and the need for diagnostic evaluation.
  • Evaluation of dementia education programs for health care providers.
2: Support for Ethical and Responsible Decision Making
  • Development and evaluation of approaches to including persons with dementia in conversations about their preferences and care, and guidance for adapting communication as the severity of disease increases.
  • Improved guidance on balancing the goals of autonomy and safety for the person living with dementia and others who could be harmed, as well as training for clinicians and others in applying this guidance.
  • Improved education for families about the types of decisions affected by dementia.
  • Improved methods (e.g., shorter, less expensive, more accurate) for assessing capacity for various types of decision making.
  • Improved guidance for advance care planning for health care, financial management, housing, and other nonmedical choices.
  • Improved methods for predicting disease progression and survival, including digital markers.

CONCLUSION 3-2: Research in the following areas has the potential to advance the development of interventions to support the well-being and quality of life of people living with dementia:

  • Development and validation of outcome measures that reflect the perspectives 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.
Suggested Citation:"Appendix D: Complete Research Agenda." National Academies of Sciences, Engineering, and Medicine. 2021. Reducing the Impact of Dementia in America: A Decadal Survey of the Behavioral and Social Sciences. Washington, DC: The National Academies Press. doi: 10.17226/26175.
×

TABLE 3-4 Detailed Research Needs: Support for Well-Being and Quality of Life

1: Development and Validation of Outcome Measures
  • Identification of outcomes of interest that apply across contexts (e.g., health care system, community, residential care) to support alignment of research.
  • Development and validation of person-centered and caregiver-centered outcome measures and outcomes that reflect positive aspects of dementia and dementia care.
  • Leveraging of existing data sources, such as claims data.
  • Identification and development of outcomes that effectively capture well-being and health-related quality of life across all stages of disease and symptomatology.
  • Development of outcome measures that can be communicated by persons living with dementia when they have capacity and by family caregivers or other proxies when they no longer have capacity.
2: Improved Design and Evaluation of Nonpharmacologic Interventions
  • Clinical and pragmatic trials to test the efficacy and effectiveness of promising but unproven nonpharmacologic interventions.
  • Research on methods of dissemination and adaptation of interventions to varied contexts and populations.

CHAPTER 4: CAREGIVERS: DIVERSITY IN DEMOGRAPHICS, CAPACITIES, AND NEEDS

CONCLUSION 4-1: Research in the following four areas has the potential to substantially improve the experience of family caregivers:

  1. Identification of the highest-priority needs for resources and support for family caregivers, particularly assessment of how caregivers’ needs vary across race, ethnicity, and community.
  2. Means of identifying the assets that family caregivers bring to their work, 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 the recipients of their care and themselves.
  3. Continued development and evaluation of innovations to support and enhance family caregiving and address the practical and logistical challenges involved.
  4. Continued progress in data collection and research methods.
Suggested Citation:"Appendix D: Complete Research Agenda." National Academies of Sciences, Engineering, and Medicine. 2021. Reducing the Impact of Dementia in America: A Decadal Survey of the Behavioral and Social Sciences. Washington, DC: The National Academies Press. doi: 10.17226/26175.
×

TABLE 4-2 Detailed Research Needs

1: Meeting Highest-Priority Needs
  • Improved description of family caregivers, with attention to the heterogeneity and disparities within the group, including such caregiver characteristics as age, ethnicity, education, skills, wealth, social capital, and geographic location, as well as to future projections of available caregivers, long-distance caregivers, and culturally diverse caregivers.
  • Improved understanding of the number and distribution of people living with dementia who do not have family caregivers, and ways to identify their unmet needs and design appropriate interventions.
  • Improved understanding of the changing needs of caregivers throughout the stages of dementia and the life course of caregivers.
  • Assessment of caregivers who balance multiple caring roles and the effects of the stress they experience.
  • Ways to identify the caregivers in greatest need and provide them with adequate support.
  • Expansion of the concept and measurement of caregiver needs to incorporate stresses associated with medical and nursing tasks and navigation of a complex landscape of long-term care supports and services.
  • Training for physicians, nurses, direct care providers, and other team members in identifying caregiver stresses and providing information about relevant resources to assist them.
  • Examination of systemic barriers to communication between providers and caregivers and navigation of the health care system.
  • Assessment of practices and experiences related to dementia diagnosis and care, including questions about caregiver access to the electronic health record and provider responsibility for identifying needs and impairments.
2: Caregiver Screening and Assessment
  • Identification of caregiver strengths and deficits across different populations and development of supports that are culturally relevant.
  • Examination of the connections between caregiver education and training and access to resources and outcomes for patients.
  • Design of an evaluation of effective, accessible educational materials for caregivers.
  • Research into technological approaches to assessment and training, including web-based education, use of smartphones, etc. Improved access to Internet-based resources is essential to address the “digital divide.”
  • Improved understanding of family dynamics and networks, family functioning and well-being, division of labor, and role definitions and their links to better outcomes.
Suggested Citation:"Appendix D: Complete Research Agenda." National Academies of Sciences, Engineering, and Medicine. 2021. Reducing the Impact of Dementia in America: A Decadal Survey of the Behavioral and Social Sciences. Washington, DC: The National Academies Press. doi: 10.17226/26175.
×
3: Intervention Development and Evaluation
  • Assessment of the efficacy of interventions for caregivers who vary by age, ethnicity, education, skills, wealth, social capital, and geography, as well as ways to integrate them routinely into care plans.
  • Study of the alignment of interventions with identified unmet needs of people living with dementia and caregivers, including housing options, transportation, social connection/isolation, money management, and protection from financial abuse.
  • Improved understanding of care coordination, reduction of poorly managed care transitions, and identification of appropriate placements.
  • Development and evaluation of strategies for fostering supportive contact between family caregivers and nursing home residents.
  • Development and improvement of technological interventions to support people living with dementia and their caregivers in ways that limit privacy intrusions while enhancing freedom and safety, including computer and smartphone applications, as well as physical devices that assist with such high-stress caring activities as toileting and bathing.
  • Development and evaluation of interventions for persons with dementia living alone and/or without family or friend caregivers.
4: Data Collection and Research Methods
  • Development of methods for collecting actionable and relevant context- and setting-specific data on the challenges faced by caregivers and the related stresses.
  • Improved study designs to facilitate adaptation beyond the research setting.
  • Implementation studies for improved understanding of how to scale up effective interventions from research settings to the real world.
  • Improved measurement of objective (physiological) outcomes and their relationship to subjective measures.

CHAPTER 5: THE ROLE OF THE COMMUNITY

CONCLUSION 5-1: Research in four areas is needed to facilitate the development of communities that are well equipped to support people living with dementia and their caregivers and families, allowing those with dementia to live independently for as long as possible and mitigating the negative effects of past and current socioeconomic and environmental stressors:

  1. Systematic analysis of the characteristics of communities that influence the risk of developing dementia and the experience of living
Suggested Citation:"Appendix D: Complete Research Agenda." National Academies of Sciences, Engineering, and Medicine. 2021. Reducing the Impact of Dementia in America: A Decadal Survey of the Behavioral and Social Sciences. Washington, DC: The National Academies Press. doi: 10.17226/26175.
×
  1. with the disease, with particular attention to the sources of disparities in dementia incidence and disease trajectory.
  2. 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.
  3. 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.
  4. 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.

TABLE 5-1 Detailed Research Needs

1: Community Characteristics That Affect Dementia Risk
  • How race/ethnicity, gender, socioeconomic status, urban/rural residence, structural racism, and segregated neighborhoods may influence the development and trajectory of dementia throughout the life span
  • The impact of exposure to neighborhood-level social and environmental stressors on the health and quality of life of individuals living with dementia
  • Evidence-based evaluations of structural interventions and policies designed to improve care and quality of life for people with dementia and caregivers, that is, interventions focused not on changing the behaviors of individuals but on the structures that shape behavioral change
2: Opportunities and Resources
  • Development of systematic means of assessing local needs and challenges and identifying gaps that are not well addressed by existing services and supports
  • Development of a community needs assessment to identify the effects of resources available in the community, such as religious institutions, adult day centers, or residential care facilities, on addressing the needs of individuals living with dementia and their caregivers
  • Identification of policies that can coordinate federal and state funding efforts to develop effective community supports
  • Identification of strategies for mobilizing community health and social welfare networks to address dementia disparities for traditionally underserved groups
  • Development of refined evaluation methods and indicators of effectiveness for interventions aimed at improving accessibility, availability, acceptability, affordability, adequacy, and awareness of services
Suggested Citation:"Appendix D: Complete Research Agenda." National Academies of Sciences, Engineering, and Medicine. 2021. Reducing the Impact of Dementia in America: A Decadal Survey of the Behavioral and Social Sciences. Washington, DC: The National Academies Press. doi: 10.17226/26175.
×
  • Interventions to reduce exposure to such community stressors as environmental pollution, crime, and neighborhood disorder
  • Development/refinement of means of monitoring the accessibility and quality of services and supports for accountability purposes
  • Identification of models and infrastructures for testing hypotheses about the relationships among interconnected community organizations addressing the needs of individuals living with dementia and their caregivers
3: Characteristics of Dementia Friendly Communities
  • Identification of community and cultural values that affect how individuals perceive dementia and of best practices among cultural groups for providing educational materials about dementia and community-based dementia care services
  • Analysis of emerging data to understand community agencies and analyze utilization of services on the local and national levels, focusing in particular on disparities
  • Refinement of reliable means of measuring the outcomes that community-level policies are designed to foster
  • Development of improved means of supporting collaboration among and facilitating the development of local organizations and resources
  • Analysis of structures and approaches for fostering collaboration among and the development of local organizations and resources
4: Innovative Approaches
  • Evaluation of innovative housing arrangements
  • Pilot testing to determine how effective programs can be taken to large scale
  • Development of new types of modeling approaches for understanding how community factors operate as part of a system to influence dementia risk and the lived experience of dementia

CHAPTER 6: HEALTH CARE, LONG-TERM CARE, AND END-OF-LIFE CARE

CONCLUSION 6-1: Research in the following areas has the potential to substantially strengthen the quality and structure of the health care provided to people living with dementia:

  • 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 (e.g., screening and detection, diagnosis, care management and planning, transition management) for individuals living with dementia throughout the disease trajectory.
Suggested Citation:"Appendix D: Complete Research Agenda." National Academies of Sciences, Engineering, and Medicine. 2021. Reducing the Impact of Dementia in America: A Decadal Survey of the Behavioral and Social Sciences. Washington, DC: The National Academies Press. doi: 10.17226/26175.
×
  • Development and evaluation of standardized systems of coordinated care for comprehensively managing multiple comorbidities for persons with dementia.
  • Identification of effective approaches for integrating care services across health care delivery and community-based organizations.

TABLE 6-1 Detailed Research Needs

1: Documentation of Care Received from Primary Care Providers
  • Documentation of existing practices and experiences of diagnosis and subsequent care management; how those practices and experiences are associated with stages of disease and symptom progression, and how they vary across type of dementia as well as racial, ethnic, and socioeconomic groups and geography
  • Assessment of the effectiveness of patient and caregiver support and management systems embedded in health care systems, and system capacity for mounting comprehensive, multifaceted interventions
  • Assessment of the effectiveness of population health management systems designed to identify and care for persons living with dementia and their caregivers as implemented by health plans and accountable care organizations
  • Identification of care gaps and unmet needs of persons living with dementia and caregiver support
  • Identification of gaps in current standardized systems of coordinated care, including management of multiple comorbidities
  • Identification of effective care practices that can be disseminated
2: Clarification of Disease Trajectories
  • Observational studies examining how persons with dementia progress clinically and in their use of services, including behavioral health care, long-term care, and end-of life care, and how these trajectories vary across type of dementia; racial, ethnic, and socioeconomic groups; and geography, as well as among those with comorbidities
3: Identification of Effective Methods for Providing Dementia Care Services
  • Studies that optimize how screening is conducted and results are communicated
  • Studies of the impact of strategies for integrating dementia-focused interventions into the workflow of primary care practices
  • Clinical trials to test the effectiveness of promising strategies for providing persons living with dementia with diagnostic and longitudinal care for all their health care needs, including care for behavioral problems and comorbid conditions, in various settings
Suggested Citation:"Appendix D: Complete Research Agenda." National Academies of Sciences, Engineering, and Medicine. 2021. Reducing the Impact of Dementia in America: A Decadal Survey of the Behavioral and Social Sciences. Washington, DC: The National Academies Press. doi: 10.17226/26175.
×
  • Studies of the impact of advance care planning at all stages of dementia and assessment of preferences, including patients’ preferences regarding palliative, hospice, and end-of-life care
  • Development and evaluation of systems for comprehensive care at the population level, including study of the use of existing and emerging models
4 and 5: Standardized Systems of Coordinated Care and Integrated Care Services
  • Studies of the application of principles of design, implementation, and diffusion that integrate science and engineering (e.g., agile management) to promote dissemination of care innovations for people living with dementia
  • Studies of the application of network science tools and processes in the dissemination of innovations
  • Investigation of strategies for disseminating evidence-based models of dementia care in rural areas and demographically diverse populations
  • Development and evaluation of comprehensive care models that span health care and community-based organizations
  • Studies of the use of electronic health record systems for integration across platforms and providers, including caregivers, to promote more efficient transactions between care facilities and community-based partners and track the effects of interventions
  • Creation and evaluation of innovative financing structures that support persons with dementia and caregivers receiving both health care and social services

CONCLUSION 6-2: Research in the following areas has the potential to substantially strengthen the quality and structure of long-term and end-of-life care provided to people living with dementia:

  • 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, particularly in light of the acceleration of those problems caused by the COVID-19 pandemic, to provide evidence for ongoing changes to the long-term care system.
  • Development and evaluation of alternatives to traditional nursing home facilities, including home care options and innovative facility designs.
  • Improved understanding of how and when patients use palliative and hospice care options and variation in the end-of-life care available across regions and populations.
Suggested Citation:"Appendix D: Complete Research Agenda." National Academies of Sciences, Engineering, and Medicine. 2021. Reducing the Impact of Dementia in America: A Decadal Survey of the Behavioral and Social Sciences. Washington, DC: The National Academies Press. doi: 10.17226/26175.
×

TABLE 6-2 Detailed Research Needs

1: Long-Term and End-of-Life Patient Needs and Available Care
  • Studies that produce demographic projections, including dementia-specific microsimulation models, based on the anticipated family structure of households in the United States and the availability of family caregivers able and willing to undertake the task of providing care for persons living with late-stage dementia
  • Studies of how patients and families are informed about their options and how decisions are made, including use of advance directives
2: Improved Nursing Home Quality
  • Effects of changes (or differences) in Medicaid payment models on the quality of nursing home and community-based services
3: Development and Evaluation of Alternative Long-Term Care Options
  • Studies of the implications for patients and families of greater reliance on home care
  • Analysis of how innovative alternatives may function in varied settings (e.g., low-income, urban, rural)
  • Analysis of how alternative staffing models function with patients at different stages of impairment
  • Comparison of effects of alternative sites and modes of care (e.g., home, assisted living facilities, small residential facilities) on caregivers and clinical outcomes for persons with dementia, as well as on utilization of facilities and services and costs
4: Use of and Variation in End-of-Life Care
  • Effects of different types of dementia care programs and payment structures on the timing of hospice referrals
  • Evaluation of the feasibility of a palliative/home care benefit for patients and families willing to forgo aggressive, life-prolonging services and treatments

CONCLUSION 6-3: Research in the following areas has the potential to substantially strengthen the arrangements through which most dementia care is funded—traditional Medicare, Medicare Advantage, alternative payment models, and Medicaid:

  • Comparison of the effects of different financing structures on the quality of care and clinical outcomes for persons living with dementia, as well as effects on their caregivers.
  • Examination of ways to modify incentives in reimbursement models to optimize care and reduce unnecessary hospitalizations and other negative outcomes for people living with dementia.
  • Development and testing of approaches to integrated financing of medical and social services.
Suggested Citation:"Appendix D: Complete Research Agenda." National Academies of Sciences, Engineering, and Medicine. 2021. Reducing the Impact of Dementia in America: A Decadal Survey of the Behavioral and Social Sciences. Washington, DC: The National Academies Press. doi: 10.17226/26175.
×

TABLE 6-3 Detailed Research Needs

1: Comparative Effectiveness of Financing Structures
  • Comparison of the quality of care, clinical and quality-of-life outcomes, and costs experienced by Medicare beneficiaries living with dementia versus those in managed care plans
  • Comparison of the outcomes of persons living with advanced dementia being cared for and managed under various specialized managed care programs and alternative payment models, such as special needs plans, accountable care organizations, and Program of All-Inclusive Care for the Elderly programs
2: Ways to Modify Incentives
  • Studies of how Medicare Advantage plans and alternative payment models best provide incentives to implement active care management for people living with dementia
3: Evaluation of Approaches to Integrated Financing
  • Identification of optimal means of financing and paying for individual services across health care delivery and community-based organizations provided to individual persons with dementia and their caregivers

CHAPTER 7: ECONOMIC COSTS OF DEMENTIA

CONCLUSION 7-1: Research in the following areas is needed to improve understanding of the economic impact of dementia and identify ways to reduce those costs:

  • 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.
Suggested Citation:"Appendix D: Complete Research Agenda." National Academies of Sciences, Engineering, and Medicine. 2021. Reducing the Impact of Dementia in America: A Decadal Survey of the Behavioral and Social Sciences. Washington, DC: The National Academies Press. doi: 10.17226/26175.
×

TABLE 7-1 Detailed Research Needs

1: Total Economic Impact
  • Quantifying of dementia-related costs not currently measured, including but not limited to caregivers’ physical and mental health care use, current and future wages, employability, financial exploitation, harms related to dementia, and impacts across generations of family members
  • Quantifying and analysis of long-term financial impacts of dementia on a spouse and family members and the intergenerational transfer of inequality related to dementia care costs
  • Assessment of distribution of costs: how costs and types of costs vary across racial/ethnic populations and other vulnerable groups, etiological type of dementia, age at dementia onset, life course of disease, and type of health care system serving persons living with dementia
  • Assessment of how costs are distributed across payers
  • Analysis of innovations in long-term care financing
  • Assessment of factors, including methods utilized, that drive differences in cost estimates
  • Improved means of estimating the impacts of new treatments, including new drugs, on Medicare, on patients and families, and on relevant policies
2: Drivers of Costs
  • Identification of the multiple individual, familial, community, and societal drivers of costs, using rigorous methods for quantifying the costs attributable to dementia
  • Analysis of how health care institutions and organizations affect costs through policies and practices
3: Value of Innovations
  • Analysis of the value of innovations in dementia prevention, diagnosis, treatment, and care models, considering both direct and indirect costs and the value of extended life-years and quality of years (social value)
  • Use of rigorous tools, including but not limited to dynamic microsimulation models, for analyzing and quantifying the cost and health implications of innovations in diagnostics and treatments for dementia
  • Application of the tools of behavioral economics to identify opportunities to reduce the economic impact of dementia
Suggested Citation:"Appendix D: Complete Research Agenda." National Academies of Sciences, Engineering, and Medicine. 2021. Reducing the Impact of Dementia in America: A Decadal Survey of the Behavioral and Social Sciences. Washington, DC: The National Academies Press. doi: 10.17226/26175.
×

CHAPTER 8: STRENGTHENING DATA COLLECTION AND RESEARCH METHODOLOGY

CONCLUSION 8-1: Advances in research methodology are needed to support progress in virtually every domain of dementia research. Progress in five areas will support a research agenda to reduce the negative impacts of dementia by strengthening data collection and research methodology:

  1. Expansion of data infrastructure.
  2. Improved measurement of exposures and outcomes.
  3. 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.
  4. Development of systematic approaches for integrating evidence from disparate studies.
  5. Improved inclusion and representation among both research participants and researchers.

TABLE 8-1 Detailed Research Needs

1: Expansion of Data Infrastructure
  • Fostering of new applications for existing data sources, including those from beyond the health care context (e.g., by improving the extraction of relevant constructs from existing data sources)
  • Development of new tools for data linkage across health care system, payer, and community-based data systems, including standards for variables and protocols
  • Funding to support documentation, archiving, and sharing of existing datasets and follow-up of previously abandoned datasets, including RCTs that evaluated relevant treatments but did not originally include dementia-relevant outcomes
  • Creation of a “reference database” by linking multiple data sources that researchers can use for comparison against localized samples and selection of settings for new studies
  • Evaluation of biases in who is selected into research studies; how data are collected; and how measurements are made, including algorithmic bias
  • Increased focus and accountability related to inclusion in research participation and development of a testable scientific framework for conducting inclusive research
Suggested Citation:"Appendix D: Complete Research Agenda." National Academies of Sciences, Engineering, and Medicine. 2021. Reducing the Impact of Dementia in America: A Decadal Survey of the Behavioral and Social Sciences. Washington, DC: The National Academies Press. doi: 10.17226/26175.
×
2: Improved Measurement
  • Evaluation of the correspondence between evolving biomarkers and clinical/functional outcomes of relevance to people living with dementia
  • Development of standardized definitions/tools for identifying dementia and capturing stages of disease
  • Development of reliable and valid early markers of subsequent disease—potentially based on novel, nontraditional data sources—to foster research on causes of disease
  • Research to improve measurement validity across disease stages, outcome domains, and assessment modes
  • Expanded inclusive measurement strategies to yield valid measures for diverse populations, including heterogeneous cultural settings, racial/ethnic identities, gender/sexual minority groups, and linguistic backgrounds
  • Tools to support valid crosswalks between assessments from different instruments or modalities
  • Fostering of exploratory research to evaluate novel exposures that may influence disease risk across the life course
  • Development of improved measures of consent to participate in research
3: Support for the Adoption of More Rigorous Study Designs
  • Broadening of the repertoire of tools for estimating causal effects in nonrandomized settings
  • Development of opportunities for quasi-experimental studies, natural experiments, instrumental variables analyses, regression discontinuity methods, difference-in-difference methods, and other approaches that do not depend on the “no-confounding of exposure–outcome association” assumption
  • Investment in more comprehensive analyses of RCTs to evaluate mediation, bias, and generalizability, particularly in parallel with real-world data
  • Support for implementation science’s focus on scalable interventions and how new discoveries are disseminated and adopted (e.g., via new policies, behavioral interventions, or systems changes)
  • Development of platforms to facilitate fielding of pragmatic trials embedded in health care systems and analysis of the results of those trials
  • Investment in qualitative work to identify new questions, improve the cultural validity of measurements, and better understand why past interventions succeeded or failed
  • Improved strategies for evaluating complex, dynamic interventions, such as community-based initiatives
  • Development of guidelines for conceptualizing study design trade-offs that could be used to prioritize research investments
Suggested Citation:"Appendix D: Complete Research Agenda." National Academies of Sciences, Engineering, and Medicine. 2021. Reducing the Impact of Dementia in America: A Decadal Survey of the Behavioral and Social Sciences. Washington, DC: The National Academies Press. doi: 10.17226/26175.
×
4: Development of Systematic Approaches for Evidence Integration
  • Fostering of research on heterogeneity in treatment response/exposure effects across populations, and methods to support generalizing from samples in existing studies to other populations
  • Expansion of meta-analytic and related approaches to integrate findings from heterogeneous study designs more flexibly and correct for bias
  • Quantifying of the population health and health equity impacts of proposed policies, interventions, or therapies
  • Facilitation of linkage of data, including data from electronic health records, claims, research studies, and records of community-based organizations (e.g., consenting, nonrandomized control groups; proxy respondents)
5: Improved Inclusion and Representation Among Research Participants and Researchers
  • Bolstering of training efforts to accommodate changing standards of living, continue to foster diversity and representation in the research workforce, and emphasize the interdisciplinary skills noted elsewhere

CHAPTER 9: TEN-YEAR RESEARCH PRIORITIES

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:

  1. 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.
  2. 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.
  3. 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).
  4. 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.
Suggested Citation:"Appendix D: Complete Research Agenda." National Academies of Sciences, Engineering, and Medicine. 2021. Reducing the Impact of Dementia in America: A Decadal Survey of the Behavioral and Social Sciences. Washington, DC: The National Academies Press. doi: 10.17226/26175.
×
  1. 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.

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
3-1
3-2
4-1
5-1
6-1
6-2
6-3
2: Rectifying Inequities and Disparities 2-1
3-2
4-1
5-1
6-1
7-1
3: Developing Innovations 3-1
3-2
4-1
5-1
6-1
6-2
6-3
4: Easing and Balancing Costs 6-3
7-1
5: Pursuing Advances in Research Capability 2-1
3-2
4-1
8-1

CONCLUSION 9-2: A 10-year research agenda will be optimally effective if it

  • is coordinated to ensure that the breadth of topics identified in this report is 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;
Suggested Citation:"Appendix D: Complete Research Agenda." National Academies of Sciences, Engineering, and Medicine. 2021. Reducing the Impact of Dementia in America: A Decadal Survey of the Behavioral and Social Sciences. Washington, DC: The National Academies Press. doi: 10.17226/26175.
×
  • 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.

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.
Suggested Citation:"Appendix D: Complete Research Agenda." National Academies of Sciences, Engineering, and Medicine. 2021. Reducing the Impact of Dementia in America: A Decadal Survey of the Behavioral and Social Sciences. Washington, DC: The National Academies Press. doi: 10.17226/26175.
×

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Suggested Citation:"Appendix D: Complete Research Agenda." National Academies of Sciences, Engineering, and Medicine. 2021. Reducing the Impact of Dementia in America: A Decadal Survey of the Behavioral and Social Sciences. Washington, DC: The National Academies Press. doi: 10.17226/26175.
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×
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Suggested Citation:"Appendix D: Complete Research Agenda." National Academies of Sciences, Engineering, and Medicine. 2021. Reducing the Impact of Dementia in America: A Decadal Survey of the Behavioral and Social Sciences. Washington, DC: The National Academies Press. doi: 10.17226/26175.
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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.

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. At the request of the National Institute on Aging of the U.S. Department of Health and Human Services, Reducing the Impact of Dementia in America assesses the contributions of research in the social and behavioral sciences and identifies a research agenda for the coming decade. This report offers a blueprint for the next decade of behavioral and social science research to reduce the negative impact of dementia for America's diverse population. Reducing the Impact of Dementia in America calls for research that addresses the causes and solutions for disparities in both developing dementia and receiving adequate treatment and support. It calls for research that sets goals meaningful not just for scientists but for people living with dementia and those who support them as well.

By 2030, an estimated 8.5 million Americans will have Alzheimer's disease and many more will have other forms of dementia. Through identifying priorities social and behavioral science research and recommending ways in which they can be pursued in a coordinated fashion, Reducing the Impact of Dementia in America will help produce research that improves the lives of all those affected by dementia.

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