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:
- 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).
- 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.
- 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,
- modifying the environment, or changing social policies/systems to promote brain health.
- 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||
|3: Inequality in Dementia||
|4: Mechanisms Through Which Socioeconomic Factors Operate||
|5: Interventions Involving Changes in Policies, Systems, or Individual Behaviors||
|6: Effective Means of Communicating About Risk and Protective Factors||
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.
TABLE 3-3 Detailed Research Needs: Diagnosis and Decision-Making Support
|1: Improved Screening and Diagnosis||
|2: Support for Ethical and Responsible Decision Making||
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.
TABLE 3-4 Detailed Research Needs: Support for Well-Being and Quality of Life
|1: Development and Validation of Outcome Measures||
|2: Improved Design and Evaluation of Nonpharmacologic Interventions||
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:
- 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.
- 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.
- Continued development and evaluation of innovations to support and enhance family caregiving and address the practical and logistical challenges involved.
- Continued progress in data collection and research methods.
TABLE 4-2 Detailed Research Needs
|1: Meeting Highest-Priority Needs||
|2: Caregiver Screening and Assessment||
|3: Intervention Development and Evaluation||
|4: Data Collection and Research Methods||
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:
- 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 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.
- 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||
|2: Opportunities and Resources||
|3: Characteristics of Dementia Friendly Communities||
|4: Innovative Approaches||
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.
- 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||
|2: Clarification of Disease Trajectories||
|3: Identification of Effective Methods for Providing Dementia Care Services||
|4 and 5: Standardized Systems of Coordinated Care and Integrated Care 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.
TABLE 6-2 Detailed Research Needs
|1: Long-Term and End-of-Life Patient Needs and Available Care||
|2: Improved Nursing Home Quality||
|3: Development and Evaluation of Alternative Long-Term Care Options||
|4: Use of and Variation in End-of-Life Care||
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.
TABLE 6-3 Detailed Research Needs
|1: Comparative Effectiveness of Financing Structures||
|2: Ways to Modify Incentives||
|3: Evaluation of Approaches to Integrated Financing||
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.
TABLE 7-1 Detailed Research Needs
|1: Total Economic Impact||
|2: Drivers of Costs||
|3: Value of Innovations||
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:
- Expansion of data infrastructure.
- 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.
TABLE 8-1 Detailed Research Needs
|1: Expansion of Data Infrastructure||
|2: Improved Measurement||
|3: Support for the Adoption of More Rigorous Study Designs||
|4: Development of Systematic Approaches for Evidence Integration||
|5: Improved Inclusion and Representation Among Research Participants and Researchers||
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:
- 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.
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 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;
- 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.
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