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Dementia Care Summit Gaps and Opportunities

The goal of the summit was to bring together individuals with a variety of backgrounds to identify evidence-based programs, strategies, approaches, and other research that can be used to improve the care, services, and supports of persons with dementia and their caregivers. The 2020 Summit Virtual Meeting Series and the Request for Information provided opportunities for individuals to share perspectives about critical scientific gaps and opportunities for research to help inform federal agencies, foundations, and private sector organizations.

The research gaps and opportunities included in the final Summit report are provided here by thematic area:

Theme One: Impact of Dementia

This theme includes issues related to heterogeneity and trends in the lived experience of dementia, including the clinical impact and trajectory for persons living with dementia (PLWD) and their care partners across the range of etiologies; the economic impact of dementia for patients, care partners, payers, public programs, and society; and the effects of dementia, including the impact of health disparities on diverse populations – for example, by sex and gender, socioeconomic status, geography, race and ethnicity, language, education, living arrangements, including people living alone or without caregivers.

  1. Conduct research to describe the nature, trajectory, and impacts of common and rare forms of AD/ADRD, or AD/ADRD with complex co-occurring conditions, on individuals, families, and society. Impacts should include particular attention to the needs, preferences, and strengths of individuals with and without care partners. Complex co-occurring conditions refers to both medical conditions (e.g., diabetes, hypertension), as well as other conditions that affect daily function and interaction (e.g., sensory impairments, urinary incontinence).
  2. Conduct research to assess the extent to which differences in the nature, trajectory, and impact of AD/ADRD are mediated by heterogeneity among individuals and families. Heterogeneity includes disease etiology, age of onset, disease severity, presence of complex co-occurring conditions (see 1.1), familial relationship (e.g., spouse/partner, adult child, sibling, in-law), race and ethnicity, socioeconomic status, health disparities, gender identity, sexual orientation, and geography.
  3. Conduct research on the positive and negative effects of pre-clinical diagnoses on persons receiving this diagnosis and their care partners as well as on health systems, utilization, and costs of care. Positive effects include opportunities to self-advocate, participate in research, and engage in quality of life decision-making and advance care planning. Negative effects include labeling and stigma, emotional stress, and legal and financial repercussions.
  4. Conduct research to examine the impact of explicit and implicit bias and stigma against PLWD and their care partners on their wellbeing. Impact includes understanding the lived experience of membership in more than one stigmatized group, (i.e., the intersectionality of gender, race, socioeconomic status, rurality, and immigration status) that may heighten vulnerabilities and health disparities and decrease personal and family capabilities of PLWD with and without care partners.
  5. Conduct research to better describe how social determinants of health and attributes of the neighborhood and community in which individuals live as well as national-level cultural and political factors affect the well-being of both PLWD with and without care partners and on care partners. Social determinants include education, social and economic resources, health disparities, housing and transportation, healthcare and aging services infrastructure, disability policy, immigration policy.
  6. Conduct research to determine how risks to well-being differ among care partners based on caregiving circumstances, and how such differences are mediated by individual, family, and disease characteristics. Dimensions of well-being include social isolation, marital breakdown, loneliness, financial, legal, psychological vulnerabilities, injuries, and self-neglect. Caregiving circumstances include living arrangement, competing family and work responsibilities, availability and interpersonal dynamics of family and other helpers, social and economic resources, and health disparities.
  7. Conduct research to characterize and identify gaps in the care settings in which PLWD with and without care partners receive personal care services, medical, psychiatric, substance use, and recreational services as well as issues related to aging in place. Settings include community-based, residential care, nursing facilities, senior housing, among other settings.
  8. Conduct research to describe how economic and financial burdens affect the lived experiences of persons with dementia with and without care partners and their care partners, including choices about diagnosis, treatment, supportive services use, and research participation.
  9. Conduct research to describe the effects of AD/ADRD on financial status and financial outcomes. Financial outcomes include spousal/family impoverishment, reduction or loss of employment opportunities, disruption of employee benefits (e.g., health insurance, accrual of social security benefits and/or private retirement), health disparities, uptake of long-term care insurance, and eligibility for long-term services and supports for PLWD with and without care partners and their families and other care partners.

Theme Two: Long-Term Services and Supports in Home, Community, and Residential Care Settings for Persons Living with Dementia and their Caregivers

This theme includes issues related to the organization, financing, and delivery of long-term services and supports (LTSS) in the home and community and in residential settings, such as assisted living and nursing homes. Issues related to LTSS workforce, services provided by community-based organizations, payment and financing, industry, and care partner needs are addressed.

  1. Use theory-driven frameworks to develop and test interventions that address the complex challenges experienced by PLWD and their care partners over the full course of the disease. For example, approaches can be guided by theories related to socio-ecological levels and social determinants of health and heterogeneity, including such issues as cultural diversity, and be used to reduce health disparities. The full course of the disease recognizes the evolving role of care partners over the disease course, including new care partners introduced later in the disease.
  2. Assess how interventions' effects on clinical endpoints of PLWD (e.g., cognition, function, well-being) relate to other considerations, including intensity of caregiving demands, care partner health, movement into residential long-term care, and costs to individuals, families, and society.
  3. Develop and evaluate interventions that address the social and emotional needs, including isolation, of PLWD, their care partners, and direct care workers. Interventions could include mindfulness-based approaches, physical activity, cognitive behavioral therapy, music, positive affect training, and technology.
  4. Develop and evaluate training for direct care workers to identify specific competencies and modalities that best contribute to improved health, quality of life, and financial and social outcomes for PLWD, their care partners, and the direct care workers themselves. Training includes technology to assist training and training in use of technology.
  5. Analyze the impact of heterogeneity among PLWD and the direct care worker and clinician workforce (paid and unpaid) and develop and test approaches that promote cultural awareness and respect, cultural competence, and communication skills. Heterogeneity includes racial, ethnic, and cultural identity and other factors that may affect underrepresentation in research and/or health disparities.
  6. Determine the relative effectiveness and efficiency of interprofessional workforce models in providing high-quality care to PLWD, and how to support workforce collaboration across home, community, and residential settings.
  7. Analyze the interactions between care partners, direct care workers, and clinicians, in relation to technologies designed for the care of PLWD; determine how technological change will affect future workforce needs, and design and evaluate effective education and training for care partners, direct care workers, and clinicians to use new technologies effectively.
  8. Conduct research to improve the supportive and care-related technologies available for and used by PLWD and their care partners, especially in populations with more limited social and economic resources. Examples of technological advances include smart phones, monitoring devices, remote technology, and smart assistive devices.
  9. Using measures that evaluate quality across LTSS settings in which PLWD receive care, evaluate alternative payment models, quality oversight efforts, and public reporting initiatives.
  10. Conduct research to examine the adequacy of payments for care received by PLWD in value-based payment efforts in the Medicaid and Medicare programs and other alternative payment models, as well as the effects on out-of-pocket expenses and on care partners. Medicare and Medicaid programs include Medicaid managed care plans, Medicare Advantage, and Special Needs Plans. Alternative payment models include accountable care organizations and bundled payment initiatives.
  11. Assess whether and how eligibility and payment policies for specific benefits pose barriers to receipt of supportive, palliative, and end-of-life care services, and evaluate ways in which these policies might be reformed to better meet the needs of PLWD and their care partners and reduce health disparities. Specific benefits include hospice, post-acute care, and psychological services.

Theme Three: Services and Supports in Medical Care Settings for Persons Living with Dementia

This theme includes issues related to the organization, financing, and delivery of medical care across the continuum of health care settings that serve individuals at risk for and living with dementia, including office and home, urgent care, emergency department, hospital inpatient, post-acute care (including skilled nursing facility and home health care), and hospice. Issues related to the care and provider workforce, payment and financing, and industry are addressed.

  1. Evaluate and compare comprehensive models of care and develop new models for subgroups of PLWD that are not effectively served by existing models. Specifically compare “stand-alone” care models that support primary care of PLWD/dyads versus those embedded in primary care programs and other mainstream models of care delivery.
  2. Determine the core competencies, domains, and quality metrics needed to ensure that medical care for PLWD is consistent with evidence-based clinical standards.
  3. Develop and test the efficiency and effectiveness of strategies to provide PLWD with diagnostic and longitudinal comprehensive care, including co-existing conditions, in various settings. These settings include typical clinical settings such as ambulatory care network settings and small practice settings, settings serving PLWD who have limited resources, including rural and safety net settings (such as Federally-Qualified Health Centers), and residential care.
  4. Assess the impact of promoting care planning, assessment, evaluation of preferences, and advanced care coordination across the range of disease stages, from preclinical to severe dementia, on the efficiency, effectiveness, and experience of care of PLWD and their care partners. Advanced care coordination includes advance care planning, end-of-life, palliative care, and hospice.
  5. Determine the qualitative and quantitative impact of improvements in detection, diagnosis, treatment, and care management of PLWD across all treatment settings, on individuals, families, and society.
  6. Study the effect of access to health insurance on the receipt of person-centered care and the location of care for PLWD.
  7. Determine how payment affects access and quality of care received by PLWD in a variety of community and residential settings.
  8. Develop and test the ethical implications and cost-effectiveness of inclusion of the caregiver in the care team of the PLWD.

Integration, Themes Two and Three: The Present and Future of Integrated Long-Term and Medical Care

These gaps and opportunities address the integration of Themes 2 and 3, including innovations in the organization, financing, and delivery to support integration of medical care and long-term services and supports (LTSS) across the range of settings in which PLWD and their care partners live and receive care.

  1. In the context of integrated long-term services and supports (LTSS) and medical care for PLWD, determine what services are appropriate for integration versus coordination, in what manner, for whom, toward what ends, and with what payer arrangements. Integrated care may include co-location or care provided within a single delivery system or source of funding of services or supports, whereas coordination refers to deliberate organization of services through exchange of information by care providers responsible for varied aspects of care. Research should examine the broad spectrum of PLWD, from diagnosis and early intervention through mid-stage to end-of-life.
  2. Develop, evaluate, and optimize approaches to quality measurement in the context of value-based care initiatives, so as to encourage and support optimal integrated and coordinated care delivery models and approaches for PLWD. Approaches include health information technology.
  3. Develop and evaluate evidence-based strategies for the optimal integration and coordination of AD/ADRD care services across healthcare delivery and community-based organizations, including examining whether models of integrated LTSS and medical care are best designed as carve out (separate) models or as add-in models that are coordinated within the broader system. Evidence-based strategies include tools and assessments, models of care, and technologies that focus on the range of rural and urban settings. Integrated care includes both Medicaid supported and other populations and financing models, such as Medicare Advantage and Alternative Payment Models.
  4. Conduct research to develop, implement, and evaluate public health emergency preparedness and disaster responsiveness systems that meet the social, emotional, and medical needs of PLWD and their care partners. Needs include ensuring personal emergency response equipment and immediate emergency response; safe evacuation and transportation; basic food, lodging, medical, and support services; and long-term management and monitoring. In addition, ensuring that medical facilities, including emergency departments, hospitals, and nursing homes are capable of providing comprehensive care for PLWD that accounts for their range of needs. Such research should address potential disparities of PLWD with limited social and economic resources.
  5. Conduct research to develop and evaluate tools, strategies, and models that more effectively train, support, and involve care partners in the care of PLWD. Such research should consider efforts to better prepare the workforce to address the needs of care partners of persons affected by various types of dementia etiologies and from subgroups at heightened risk for health disparities (e.g., by educational attainment, health literacy, or with less access to care).
  6. Conduct research to develop and study mechanisms to support the involvement of care partners when they play essential roles implementing the care plan of the PLWD. Such research may encompass a wide range of compensation to care partners as well as the organizations that pay for the care of PLWD, such as traditional Medicare, Medicare Advantage, Medicaid, and other private payers.

Theme Four: Participation of Persons with Dementia and their Caregivers in Research

This theme addresses participation in research and considers PLWD and their family caregivers as research participants and as engaged research partners. Topics include the impact of activated patient communities on study design and outcomes, nomenclature, and strategies for recruitment and retention; optimizing collection of information from a range of sources including PLWD and other informants, technology-based sources, and meta-data; considerations for returning genetic and biomarker information and other study data to participants; and talking about research and research results with PLWD and their care partners.

  1. Test research strategies, practices, or methods to increase recruitment of heterogeneous samples in AD/ADRD research and improve representation of underserved and under-included groups to understand and reduce health disparities. These methods should increase understanding of the lived experience of groups that have heightened risk, more limited access to care, and greater disease burden, and are from stigmatized or otherwise culturally disadvantaged groups (see 1.3).
  2. Develop and implement broader conceptualizations and measures of outcomes that are informed by the perspectives of PLWD and their care partners. Such measures should be person- and family-centered in orientation, holistic in focus, positive in nature, and able to be used pragmatically across medical and long-term services and supports settings, and should incorporate an equity lens.
  3. Develop and test methods to address fluctuating and/or declining cognition, including loss of insight, to enhance appropriate use of self-report by PLWD. Attention should be devoted to understanding the implications of new methods of data collection and reporting in the context of various types of dementia.
  4. Develop and test methods to integrate multiple sources of information to optimize outcomes measurement; address multiple reporter concordance, discordance, and weighting strategies. Multiple sources of information may include clinical data, information reported from PLWD, information reported by a knowledgeable informant (e.g., caregiver/care partner), and technology-derived data.
  5. Develop and test personalized outcomes as endpoints in intervention trials. Personalized outcomes refer to measures that reflect individual preferences and/or goals that can be used to tailor and individualize services and supports.
  6. Develop and test methods to capture well-being and health-related quality of life across all stages of disease and symptomatology. Well-being and health-related quality of life includes that of PLWD and paid and unpaid care partners.
  7. Conduct research to determine how language about aging and cognitive disorders affects the conduct of dementia studies.
  8. Undertake research to understand how nomenclature influences recruitment into research and identify best practices for disclosure of research results. This includes consideration of the impact of nomenclature and language on diverse groups, including those at heightened risk of dementia and those from stigmatized or otherwise culturally disadvantaged groups.
  9. Determine how nomenclature for AD/ADRD and caregiving contributes to stigma and develop and test strategies that can mitigate stigma about dementia and dementia caregiving. Stigma may be on a personal or societal level.
  10. Identify methods to improve the validity, value, and efficiency of studies given increased sharing of information among participants and potential participants. Such efforts should address impact on the methodological rigor of studies for which activated patient communities might share information that breaks the study blind, influences recruitment in a non-systematic way, or otherwise challenges traditional study design and conduct.
  11. Identify methods to understand, increase, and evaluate stakeholder engagement in dementia studies across the full range of potential stakeholders, research processes, and residential and care delivery settings. Such efforts should address engaging stakeholders from underserved and under-included groups, particularly those from stigmatized or otherwise culturally disadvantaged groups. Stakeholder engagement can include participation in research question generation and prioritization, review of funding applications, participation in the conduct of research (e.g., recruitment and retention, review of study materials), and dissemination of study results.

Theme Five: Intervention Research, Dissemination, and Implementation

This theme addresses methods to improve the methodological rigor of implementation science in AD/ADRD interventional research and facilitate the spread of evidence-based interventions relating to dementia care and caregiving that targets individuals, dyads, or organizations, including strategies to motivate systems change to promote adoption and sustainability.

  1. Identify strategies to shorten the timeline of translating innovative AD/ADRD care services for widespread use. Research should assess contextual and structural features of the environment and organizations that catalyze interaction, collaboration, and coordination of interdisciplinary teams and organizations.
  2. Identify strategies that create market demand for the rapid implementation and diffusion of evidence-based AD/ADRD care models within various payment models. Market demand encompasses both individuals and families as well as public and private payers.
  3. Conduct innovative research using designs that increase the generalizability of research findings and promote the translation of effective dementia programs and services to real-world settings. Diverse methodologies should be encouraged, including pragmatic trials, adaptive trials, quasi-experimental designs, hybrid designs, mixed methods, rapid-cycle iterative design, and agile process measurement. Person-centered outcomes research models with stakeholder engagement and practice-based research models should be considered to facilitate this translation.
  4. Develop and evaluate approaches to incorporate AD/ADRD-focused intervention strategies into the current and future workflow of busy primary care settings. Such strategies may refer to tools such as screening and assessment instruments or care processes such as counseling or advance care planning.
  5. Conduct research to understand the effects of strategies to financially compensate community-based organizations that have essential roles in the care of PLWD.
  6. Conduct research to evaluate how principles of design, implementation, and diffusion that integrate science and engineering can promote dissemination of care innovations for PLWD. Such research should draw on the science of improvement and process evaluation techniques such as agile methodology and Plan-Do-Study-Act cycles.
  7. Develop and evaluate tools, processes, and strategies to reduce health disparities in AD/ADRD care by disseminating evidence-based models. Such research should address disparities by geography (e.g., urban vs. rural), providers (e.g., federally qualified health centers and those disproportionately serving stigmatized and lower socio-economic status groups), and underserved populations.
  8. Develop scalable, sustainable, and actionable AD/ADRD interventions that payers and providers can use “off the shelf” in practice. Such efforts should provide evidence on quality, safety, and financial return on investment, and guidelines on how to implement the intervention, including key contextual factors.

Theme Six: Research Resources, Methods, and Data Infrastructure

This theme includes a focus on methods, data, and processes to facilitate cross-cutting, high-impact research including approaches to intervention research (including pragmatic trials) and observational studies to enable monitoring of progress toward achieving research implementation milestones. Issues include survey infrastructure, ethical frameworks, costs, access to data from electronic health records.

  1. Develop a public-private consortium to support a national data repository and technical assistance infrastructure that promotes interventions to improve the lives of PLWD and their care partners. The repository would include secure data from existing research, access techniques, research and analytic models, and implementation and dissemination strategies. It would be curated and updated with technical assistance available to researchers, health systems, and policymakers to optimize utilization of the repository, informed by an engaged research model.
  2. Undertake research to test the value of machine learning and artificial intelligence approaches to identify PLWD and their care partners that may be used to efficiently measure their needs for services, and outcomes of care. Diverse sources for this work may include electronic health records (EHR), health insurance claims, as well as financial credit and driving records. Attention should be devoted to understanding the ethical and other related implications of such approaches across various types of dementia etiologies and subgroups of PLWD who are at risk for disparities in access to AD/ADRD care.
  3. Conduct research on methods to engage payer and provider organizations in applied research on dementia-related care, services, and supports.
  4. Develop measures and approaches to monitor the adoption, dissemination, and effectiveness of dementia capable communities on outcomes that matter to PLWD, their care partners, payers, and society.
  5. Evaluate new and modified measures for identifying and characterizing PLWD who may benefit from dementia care interventions being tested in population-based and healthcare system-based studies and for monitoring progress toward identified milestones at the national, state, and community-levels.
  6. Promote research that integrates different techniques to identify cognitive impairment and disease staging for inclusion in research studies. Such research should draw on imaging, biomarkers, cognitive testing, and functional assessment and assess the effectiveness for persons with various types of dementia etiologies. Disease includes common and specific rare forms of AD/ADRD.
  7. Develop infrastructure for public health efforts and population-based studies of PLWD and care partners to monitor progress toward meeting national, state, and community milestones, including key subpopulations of interest. Needed infrastructure includes measures, surveys, and reporting systems and should prioritize capacity to report progress toward reducing health disparities.
  8. Develop and test new approaches to engaging persons with cognitive impairments in research who may not have the capacity to provide consent using traditional standards. Conduct research on the use of assent and dissent, with special consideration for understanding capacity, beneficence, and access to research both for individuals with dementia and their care partners.
  9. Conduct research to guide Institutional Review Boards and ethics committees on how to facilitate the appropriate collection of self-report data from PLWD and their care partners.
  10. Develop secure and ethical approaches to data collection through home monitoring.