Skip to main content

Currently Skimming:

Appendix D: Complete Research Agenda
Pages 321-340

The Chapter Skim interface presents what we've algorithmically identified as the most significant single chunk of text within every page in the chapter.
Select key terms on the right to highlight them within pages of the chapter.


From page 321...
... 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, 321
From page 322...
... , 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
From page 323...
... • Identification of the opportunity costs of proposed interventions 6: Effective Means of • Research on the tailoring of communication about the Communicating About quality of evidence regarding suspected risk factors to Risk and Protective different communities to help individuals make informed Factors decisions CHAPTER 3: IMPROVING OUTCOMES FOR INDIVIDUALS LIVING WITH DEMENTIA CONCLUSION 3-1: Research in the following areas related to diag nosis and decision-making support has the potential to substantively improve the experience of individuals living with dementia by support ing 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 deci sion making by and for people living with dementia.
From page 324...
... 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 amelio rate behavioral and psychological symptoms, improve comfort and well-being, and adequately and equitably serve diverse populations.
From page 325...
... • 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.
From page 326...
... • 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.
From page 327...
... • 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.
From page 328...
... TABLE 5-1 Detailed Research Needs 1: Community • How race/ethnicity, gender, socioeconomic status, urban/rural Characteristics That residence, structural racism, and segregated neighborhoods Affect Dementia Risk 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 • Development of systematic means of assessing local needs and Resources 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
From page 329...
... • 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)
From page 330...
... TABLE 6-1 Detailed Research Needs 1: Documentation of Care • Documentation of existing practices and experiences of Received from Primary diagnosis and subsequent care management; how those Care Providers 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 • Observational studies examining how persons with Trajectories 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 • Studies that optimize how screening is conducted and Effective Methods for results are communicated Providing Dementia Care • Studies of the impact of strategies for integrating dementiaServices 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
From page 331...
... to promote Services 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 avail able 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.
From page 332...
... • 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 • Effects of different types of dementia care programs and in End-of-Life Care 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 poten tial 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.
From page 333...
... APPENDIX D 333 TABLE 6-3 Detailed Research Needs 1: Comparative • Comparison of the quality of care, clinical and quality-of-life Effectiveness of outcomes, and costs experienced by Medicare beneficiaries Financing Structures 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 • Studies of how Medicare Advantage plans and alternative Incentives payment models best provide incentives to implement active care management for people living with dementia 3: Evaluation of • Identification of optimal means of financing and paying Approaches to for individual services across health care delivery and Integrated Financing 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 iden tify 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.
From page 334...
... 334 REDUCING THE IMPACT OF DEMENTIA IN AMERICA TABLE 7-1 Detailed Research Needs 1: Total Economic • Quantifying of dementia-related costs not currently Impact 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
From page 335...
... TABLE 8-1 Detailed Research Needs 1: Expansion of Data • Fostering of new applications for existing data sources, Infrastructure 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 Continued
From page 336...
... 336 REDUCING THE IMPACT OF DEMENTIA IN AMERICA TABLE 8-1 Continued 2: Improved • Evaluation of the correspondence between evolving Measurement 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 • Broadening of the repertoire of tools for estimating causal Adoption of More effects in nonrandomized settings Rigorous Study Designs • 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
From page 337...
... 4. Easing of the financial and economic costs of dementia to individ uals, families, and society and balancing of long-term costs with long-term outcomes across the life span.
From page 338...
... 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 effec tive 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;
From page 339...
... APPENDIX D 339 • 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 begin ning 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 pri orities 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 trans late findings into programs with impact on a broad scale; and • dissemination of research findings to policy makers.


This material may be derived from roughly machine-read images, and so is provided only to facilitate research.
More information on Chapter Skim is available.