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Dementia Care Summit Gaps and Opportunities

The goal of the summit is 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 provide 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 Summit Steering Committee, with input from the first Request for Information (NOT-AG-19-016) and several stakeholder groups, developed a set of draft research gaps and opportunities in line with the six themes of dementia care and caregiving research. The Steering Committee will finalize the draft research gaps and opportunities based on the Summit Virtual Meeting Series and responses from the current Request for Information (NOT-AG-20-035).

Draft research gaps and opportunities will be posted soon and include the following thematic areas:

Theme 1: 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 people living with dementia and their family caregivers across the range of etiologies; the economic impact of dementia for patients, caregivers, 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 ADRD on individuals, families, and society with particular attention to the needs, preferences, and strengths of individuals (with and without care partners) living with both common and rare forms of dementia or with complex co-occurring conditions.
  2. Conduct research to assess the extent to which differences in the nature, trajectory, and impact of ADRD are mediated by heterogeneity among individuals and families with regards to disease etiology, age of onset, disease severity, familial relationship (e.g. spouse/partner, adult child, sibling, in-law), race and ethnicity, socioeconomic status, gender identity, sexual orientation, geography.
  3. Conduct research to examine the nature, types, trajectory, and impact of implicit bias and stigma against PLWD (with and without care partners) and their care partners on their wellbeing. This 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 decrease personal and family agency.
  4. Conduct research to better describe how social determinants of health (e.g. education, social and economic resources, housing and transportation, healthcare and aging services infrastructure, disability policy, immigration policy, etc.) and attributes of the neighborhood and community in which individuals live, affect the well-being of both people living with dementia (with and without care partners) and care partners.
  5. Conduct research to determine how risks to wellbeing (e.g. social isolation, marital breakdown, loneliness, financial, legal, psychological vulnerabilities, injuries and self-neglect, etc.) differ between and among care partners based on caregiving circumstances (e.g., living arrangement, competing family and work responsibilities, availability and interpersonal dynamics of family and other helpers, and social and economic resources), as well as the extent to which such differences are mediated by individual and family characteristics along with disease etiology, symptomatology, and age of onset.
  6. Conduct research to characterize the care settings (e.g. community-based, residential care, other settings) in which PLWD (with and without care partners) receive personal care services, medical, psychiatric, substance use, and recreational services.
  7. 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 and support services, and research participation.
  8. Conduct research to describe the effects of ADRD on financial status and financial outcomes such as 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), 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.
  9. Test research strategies, practices, or methods to increase recruitment and representation of heterogeneous samples in ADRD research with a focus on methods that increase understanding of the lived experience of groups that have heightened risk, low access to care, and disparate disease burden and stigma.

Theme 2: Long-Term Services and Supports in Home, Community, and Residential Care Settings for Persons 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 the formal care and provider workforce, services provided by community-based organizations, payment and financing, industry, and caregiver needs will be addressed.

  1. Develop and implement person-centered and broader conceptualizations of outcomes that are informed by the perspective of persons with dementia (PWD), holistic in focus, positive in nature, and can be used pragmatically across long-term services and supports settings.
  2. Use theory-driven frameworks to develop and test multi-level evidence-based interventions that address the complex heterogeneous and interacting challenges experienced by PWD and their caregivers over the full course of the disease; for example, approaches can be guided by socio-ecological levels and social determinants of health, and heterogeneity can reflect cultural diversity.
  3. Assess how interventions' effect on intermediate endpoints (e.g., cognition, function, well-being) relate to longer-term outcomes including caregiving intensity, caregiver health, movement into residential long-term care, and costs to individuals, families, and society.
  4. Develop and evaluate training for direct care workers to identify specific competencies and modalities that best contribute to improved health, quality of life, financial, and social outcomes for PWD and their caregivers.
  5. Analyze the impact of diversity among PWD and the health workforce providing their care, and develop and test approaches that promote cultural humility, cultural competence, and communication skills.
  6. Determine the relative effectiveness and efficiency of different interprofessional workforce models in providing high-quality care to PWD, and how to support workforce collaboration across home, community, and residential settings.
  7. Analyze the interactions between caregivers and health care workers and technologies designed for the care of PWD; determine how technological change will affect future workforce needs, and design and evaluate effective education and training for caregivers and health care workers to use new technologies effectively.
  8. Using measures that evaluate quality across LTSS settings in which PWD receive care, evaluate and refine alternative payment models, quality oversight efforts, and public reporting initiatives.
  9. Conduct research to examine the adequacy of payments for care received by PWD in value-based payment efforts in the Medicaid and Medicare programs (including Medicaid managed care plans, Medicare Advantage and Special Needs Plans) and other alternative payment models (e.g., accountable care organizations, bundled payment initiatives), as well as their effects on out-of-pocket expenses.
  10. Assess whether and how eligibility and payment policies for specific benefits (e.g., hospice, post-acute care, psychological services) pose barriers to PWD from receiving the supportive, palliative, and end-of-life care services they need, and evaluate ways in which these policies might be reformed to better meet beneficiaries’ needs.

Theme 3: Services and Supports in Medical Care Settings for Persons 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 will be addressed.

  1. Evaluate and compare comprehensive models of care and develop new models for subgroups of persons living with dementia that are not effectively served by existing models. Specifically compare “stand-alone” care models that support primary care of PLWD/dyads versus embedded primary care programs.
  2. Determine the core competencies, domains, and milestones needed to ensure that care for PLWD is consistent with evidence based clinical standards, that is, care that maximizes function and quality of life across the continuum of health professionals who care for PLWD.
  3. Develop and test relative efficiency and effectiveness of strategies to provide persons living with dementia and their family caregivers with diagnostic and longitudinal care for all their health care needs, including co-existing conditions, in various settings including 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 early stage care planning, assessment, evaluation of preferences, and advanced care coordination - including advance care planning, end-of-life, palliative care, and hospice on efficiency, effectiveness and experience of care.
  5. Determine the qualitative and quantitative impact of improvements in detection, diagnosis, treatment and care management of PLWD, including the ability of health care providers 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 people with dementia 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: The Present and Future of Integrated Long-Term and Medical Care

This session will 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 persons with AD/ADRD and their caregivers live and receive care. 1. In the context of integrated/coordinated long-term services and supports (LTSS) and medical care for persons with dementia, determine what services are appropriate for integration/coordination, in what manner, for whom, toward what end, and with what payer arrangements. 2. Examine whether models of integrated/coordinated LTSS and medical care are best designed as carve out (separate) models or as add-in models integrated within the full health system; if separate models, clarify the (sub)populations of persons with dementia to whom they apply. 3. Develop, evaluate, and optimize approaches to quality measurement in the context of value-based care initiatives, so as to encourage and support optimal care delivery models and approaches for persons with dementia.

Theme 4: Participation of Persons with Dementia and their Caregivers in Research

This theme will address participation in research. It will consider persons living with dementia and their family caregivers as research participants and as engaged research partners. Topics to be examined 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 persons living with dementia 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 persons living with dementia and their family caregivers.

  1. Develop and test methods to address fluctuating and/or declining cognition, including loss of insight, to enhance appropriate use of self-report by PLWD.
  2. Develop and test methods to combine multiple sources of information, including clinical data, patient- and informant/caregiver-reported data, and technology-derived data, to optimize outcomes measurement; address multiple reporter concordance, discordance, and weighting strategies.
  3. Develop and test personalized or individual-specific outcomes as endpoints in intervention trials.
  4. Develop and test methods to capture well-being and health-related quality of life of PLWD and those that care for them (both paid and unpaid caregivers), across all stages of disease and symptomatology.
  5. Discover how language about aging and cognitive disorders affects the conduct of dementia studies.
  6. Understand how nomenclature influences recruitment into research and identify best practices for disclosure of research results.
  7. Determine how nomenclature for AD/ADRD and caregiving contributes to stigma, both self and public, and develop and test strategies that can mitigate stigma about dementia and dementia caregiving.
  8. Identify methods and implementation strategies to improve representation of underserved and under-included people in dementia care and services research, including for research to treat or prevent dementia.
  9. Identify methods to improve the validity, value and efficiency of studies given increased sharing of information among participants and potential participants as part of activated communities.
  10. Identify methods to increase stakeholder engagement in dementia studies across the full range of potential stakeholders, including involvement in research question generation and prioritization, review of funding applications, and dissemination of study results.
  11. Evaluate stakeholder engagement in dementia studies with attention to methods applicable across research settings.

Theme 5: Intervention Research, Dissemination, and Implementation

This theme will address methods to improve intervention research relating to dementia care and caregiving that targets individuals, dyads, or organizations and approaches to improve the implementation and dissemination of evidence-based interventions, including strategies to motivate systems change to promote adoption and sustainability.

  1. Identify contextual and structural features that would be needed to create learning laboratories to catalyze interaction, collaboration, and coordination of interdisciplinary teams and organizations to shorten the translation of innovation AD/ADRD care services into widespread use
  2. Identify factors that create market demand and promote availability of evidence-based tools for the rapid implementation and diffusion of the collaborative AD/ADRD care models within various payment models.
  3. Develop and evaluate tools, processes, and strategies to incorporate AD/ADRD-focused intervention strategies into the current and future workflow of the busy primary care systems.
  4. Develop and evaluate evidence-based tools, processes, and strategies for the most optimal integration of AD/ADRD care services across healthcare delivery and community-based organizations in rural and urban settings.
  5. Leverage advances in health information technology and network science to develop tools, process and strategies to train, support, and involve family and other caregivers in the care of persons living with AD/ADRD.
  6. Conduct research to develop and study mechanisms to financially compensate family and other unpaid caregivers of persons living with AD/ADRD when they play essential roles in implementing the care plan of persons living with AD/ADRD.
  7. Conduct research to understand the effects of strategies to financially compensate community-based organizations that have essential roles in the care of persons living with AD/ADRD.
  8. To study how principles of agile design, implementation, and diffusion that integrate science and engineering can promote dissemination of care innovations for persons living with AD/ADRD.
  9. Develop and evaluate network science tools, processes, and strategies for disseminating evidence-based models of AD/ADRD care in rural areas and within and between demographically diverse populations.
  10. Develop scalable, sustainable, and actionable AD/ADRD interventions that payers and providers can use “off the shelf” in practice to improve quality, safety, and financial return on investment, with guidelines on how to implement the intervention, including key contextual factors.

Theme 6: 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 repository for secure data access techniques, research and analytic models, and implementation and dissemination strategies promoting interventions that can improve the lives of persons living with dementia and their care partners.
  2. Undertake research to test the value of machine learning and artificial intelligence approaches designed to identify persons living with dementia and their care partners in EMR and health insurance claims, and to readily measure their needs for services and outcomes of 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 and dissemination of dementia capable communities.
  5. Evaluate new and modified measures for identifying and characterizing people living with dementia 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 including imaging, biomarkers, cognitive testing and functional assessment in order to estimate the relative contribution of each approach to disease staging systems necessary for research.
  7. Develop infrastructure (measures, surveys, reporting systems) for population-based studies of persons living with dementia and care partners to monitor progress toward meeting national, state, and community milestones, including key subpopulations of interest.
  8. Promote the translation of effective dementia programs and services to real-world settings by conducting innovative research using designs that increase the generalizability of research findings including pragmatic trials; quasi-experimental designs; hybrid designs; mixed methods; rapid-cycle quality improvement methods; and standardized process measurement and consider incorporating community-based participatory research and practice-based research models to facilitate this translation.
  9. 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.
  10. Conduct research to guide Institutional Review Boards and ethics committees on how to facilitate the appropriate collection of self-report data from persons living with dementia and their caregivers.