New AD/ADRD Care Research Implementation Milestones
NIA’s Division of Behavioral and Social Research (BSR) is pleased to announce the release of five new AD/ADRD Care Research Implementation Milestones. These new AD/ADRD Care Research Implementation Milestones cover research in AD/ADRD health care disparities, dementia care integration and care transitions, policy impacts and payment models, dementia care data infrastructure, and ethics and implications of care partners/study partners in care teams for persons living with AD/ADRD.
The AD/ADRD Care Research Implementation Milestones are informed by input from the research community and broader public to enhance our programs in AD/ADRD science, including research gaps and opportunities identified at the 2020 Dementia Care Summit’s Gaps and Opportunities. The 2020 Dementia Care Summit brought 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 research gaps and opportunities address areas of scientific inquiry that hold promise for propelling advances in policy, practice, and care to improve the lives of persons who are affected by AD/ADRD and their care partners and encompass a broad swath of topics related to care and services.
These new AD/ADRD Care Research Implementation Milestones will be incorporated into the AD/ADRD Research Implementation Milestone Database in Fall 2021.
AD/ADRD Health Care Disparities
New Milestone: Support a social and behavioral research program to elucidate the mechanisms or sources of disparities in health care access, utilization, or quality of care for persons living with AD/ADRD and their care partners and/or develop approaches to address these disparities. This disparities-focused research should be guided by the NIA Health Disparities Framework, which includes environmental, sociocultural, behavioral, and biological levels of analysis; include all health disparities populations; and encompass a life-course perspective.
Success Criteria: Launch new research initiatives to support at least six new projects or activities that:
- Move beyond documenting the existence of disparities to instead characterize the sources of or means by which disparities exist in health care access, utilization, or quality of care for persons living with AD/ADRD and their care partners; and
- Develop and test strategies, approaches, or interventions that target the sources of disparities to improve health equity in health care access, utilization, or quality of care for persons living with AD/ADRD and their care partners. These could include modifications to policy, payment models, or community, organizational, environmental, sociocultural, or individual-level approaches.
Relevant Summit Gaps & Opportunities: 2020 Dementia Care Summit 1.5, 2.1, 2.11, 4.1, 5.7
Dementia Care Integration/Care Transitions
New Milestone: Support a research program that focuses on the integration of long-term services and supports (LTSS), home-based care, and medical care with particular attention paid to care transitions for persons living with AD/ADRD to improve the timeliness of care and improved health and health care outcomes for persons living with dementia and their families.
Success Criteria: Launch new research initiatives to support at least six new projects or activities that examine related topics, such as:
- the integration of LTSS and medical care for those transitioning into palliative care;
- the longitudinal trajectory of a persons living with AD/ADRD and the challenges of care transitions across settings (e.g., home, hospital, post-acute care facilities, skilled nursing facilities, hospice);
- health outcomes related to health care navigators and/or strategies that focus on dementia care transitions to improve decision-making outcomes; and/or
- health systems research on models of integrated LTSS and medical care.
Relevant Summit Gaps & Opportunities: 2020 Dementia Care Summit 2.6, 3.3, Int.1, Int.2, Int.3, Int.4
Policy Impacts and Payment Models
New Milestone: Support a research program to address the impact of policy and payment models and insurance on persons living with dementia, their care partners, and health care systems as well as economic and organizational factors associated with uptake of health care services.
Success Criteria: Launch new research initiatives to support at least six new projects or activities focused on policy and payment models, health insurance, and/or the ability of people and families to pay for and access needed services and supports. Supported projects could include micro-simulation modeling, prediction modeling, or observational studies that address related topics, such as:
- the impact of health insurance access on health and wellbeing outcomes;
- how incentive structures can improve care for persons living with AD/ADRD;
- how policies of governments and other institutions influence access, use, and quality of health care;
- how policies and payment models impact what care is provided to whom; and/or
- research to estimate or project the burden of AD/ADRD as well as integrating economic issues related to uptake of health care services.
Relevant Summit Gaps & Opportunities: 2020 Dementia Care Summit 1.9, 2.9, 2.10, 2.11, 3.6, 3.7, Int.3, Int.6, 5.2, 5.5
Dementia Care Data Infrastructure
New Milestone: Support the development of AD/ADRD data and clinical infrastructure and harmonization processes that allow for the integration of health care, formal and informal caregiving, and other care-related data from multiple sources (e.g., EHR, claims, surveys, patient-reported outcomes) to facilitate research on diverse populations of persons living with AD/ADRD in order to improve dementia care outcomes as well as recruitment and retention for clinical trials.
Success Criteria: Establish at least one public private partnership to develop AD/ADRD data infrastructure focused on health care, formal and informal caregiving, and other care-related topics to enable analyses of care disparities among diverse populations, make such infrastructure resources available to the research community, and incentivize its use.
Relevant Summit Gaps & Opportunities: 2020 Dementia Care Summit Int.2, 4.4, 6.1, 6.2, 6.5
Ethics and Implications of Care Partners/Study Partners in Care Teams for Persons Living with AD/ADRD
New Milestone: Support a research program on the ethical implications of inclusion of the care partner in the care team for the person living with AD/ADRD and to translate existing methods to assess consent capacity in research with and without a study partner.
Success Criteria: Launch new research initiatives to support at least six new projects or activities to investigate these topics, such as those that:
- Examine the health-related outcomes, ethical implications, and/or cost-effectiveness of integration of the care partner as members of care teams for persons living with AD/ADRD;
- Analyze the ethical implications and provider incentives or disincentives for including a care partner in the care team for persons living with AD/ADRD; and/or
- Examine how the research consent process and decisions to enroll and continue in research may be dyadic or triadic, and the role of tools such as decision aids.
Relevant Summit Gaps & Opportunities: 2020 Dementia Care Summit 3.8, 6.8