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2023 National Research Summit on Care, Services, and Supports for Persons Living with Dementia and Their Care Partners/Caregivers

Human silhouettes with icons indicating health and caregiving "2023 National Research Summit on Care, Services, and Supports for Persons Living with Dementia and Their Care Partners/Caregivers"

Identifying Research Gaps and Opportunities to Improve the Care, Services, and Support of Persons with Dementia and Their Caregivers

The 2023 Dementia Care and Caregiving Research Summit will build on progress of the previous Summits to review research progress, highlight innovative and promising research, and identify remaining unmet research needs with input from the research community, persons living with dementia (PLWD) and their care partners, those who provide healthcare or services and supports to persons living with dementia, and other stakeholders. The summit will be held virtually on March 20-22, 2023.

About the Dementia Care and Caregiving Research Summit

The National Research Summit on Care, Services, and Supports for Persons Living with Dementia and their Care Partners/Caregivers (Dementia Care and Caregiving Research Summit), the Alzheimer’s Research Summits, and the Alzheimer’s Disease-Related Dementia Summits provide coordinated planning efforts that respond to the National Plan to Address Alzheimer’s Disease. Each summit provides an opportunity for individuals to share perspectives about critical scientific gaps and opportunities that reflect critical scientific priorities for Alzheimer’s disease and Alzheimer’s disease related dementias (AD/ADRD) research. The summits can inform updates to the NIH AD+ADRD Research Implementation Milestones that address the National Plan.

The first National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers was held on the NIH campus on October 16-17, 2017. The second care-focused summit was held virtually in the summer of 2020.

Steering Committee

Steering Committee Co-Chairs

Steering Committee Members

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Sessions

Session 1: What Matters Framework and Living Well With AD/ADRD

Session Co-Chairs: Antonia Bennett and Basil Eldadah

This session will include considerations of outcomes that matter most to persons living with dementia and their care partners (e.g., Jessen et al., 2022) and models for living well with dementia (e.g., UK national strategy, dementia friendly communities). Research presentations may consider lessons learned from international settings that can be applied to the U.S. context and implications for future research. The session can include international exemplars, approaches to measuring outcomes in care and caregiving research, data or other research infrastructure needs, and the importance of including positive outcome measures in research. Presenters include Siobhan Reilly, Sheila Molony, and Lee Jennings.

Session 2: Impact of Detection and Diagnosis on Individuals and Care Partners

Session Co-Chairs: Luis Medina and Luke Stoeckel

This session will address approaches to early and equitable detection of dementia as an entry point into dementia care and considers the social, economic, and institutional barriers to and facilitators of detection and diagnosis within care settings, including in primary care and in the context of the Medicare annual wellness visit. Research presentations may consider the impact of detection and diagnosis on individuals and families across diverse contexts and backgrounds. Presentations may also address issues of communicating a diagnosis and ethics of disclosure. Presenters include Raj Shah, Emmanuel Fulgence Drabo, and Ellen McCreedy.

Session 3: Dementia Care Models and Coordination of Care

Session Co-Chairs: Katherine Possin and Marcel Salive

Dementia care models and coordination of care are complex and involve a multilevel framework that includes individual and family, community, policy, and societal levels. Care is provided and received in a variety of health and community-based care settings with varying levels and types of resources at differing stages of disease, including end-of-life. This session will explore community- and health system-based dementia care model exemplars as well as the inherent challenges in developing and disseminating evidence-based models of integrated care in real-world settings to meet the diverse needs of persons living with dementia. Research presentations may address care models, transitions in care, considerations that operate across the continuum of care needs from diagnosis to end of life, and/or payment models that facilitate comprehensive, collaborative dementia care. Presenters include David Reuben, Eric Larson, and Ula Hwang.

Session 4: Disparities in Health Care Access, Utilization, and Quality

Session Co-Chairs: Chanee Fabius and Emerald Nguyen

This session will consider the policies, health care structures and practices, neighborhood, and social, and economic factors that impact health equity in care access, use, care transitions and quality of care. It may consider both health care services and specific medical treatment and management approaches. Research presentations may include notable changes in policy (e.g., telehealth) affecting care and consider priority research and infrastructure needs to address structural racism and other drivers of disparities among minoritized populations, including attention to indigenous populations and approaches to research. Presenters include Shekinah Fashaw-Walters, Norma Coe, and Jie Chen.

Session 5: Support for Care Partners and Caregivers

Session Co-Chairs: Ken Hepburn and Liz Necka

This session will explore caregiving needs, supports, and sources of strength and resilience, which can vary by culture, caregiving networks, stage of disease, and living situation (e.g., kinlessness, PLWD living alone). Topics may also include factors that facilitate or impede the uptake of caregiver-friendly policies and practices in healthcare and workplace settings. Presentations may address cultural considerations in appraisal of caregiving roles and supports at individual, familial, and system levels. Presentations highlighting innovative caregiver focused behavioral interventions should identify the targets and mechanisms of action of the intervention. Presenters include Courtney Van Houtven, Joe Gaugler, and Karen Roberto.

Session 6: Dementia Care Workforce

Session Co-Chairs: Joanne Spetz and Elena Fazio

This session will explore research innovations and challenges pertaining to the paid dementia care workforce across a range of settings, including clinical care, nursing homes, assisted living, and home- and community-based services settings. Findings relevant to the dementia care workforce from the 2022 NASEM consensus study report The National Imperative to Improve Nursing Home Quality and implications for future research as well as workforce needs to support innovations for PLWD and care partners in the community will be explored. Presenters include Jasmine Travers, Bianca Frogner, and Jennifer Reckrey.

Session 7: Economic Impacts, Implications, and Approaches

Session Co-Chairs: Pei-Jung Lin and Priscilla Novak

This session will discuss the economic impact of dementia on families and the health care system and opportunities to alleviate economic burden. Presentations will consider financial incentives in the health care system to improve dementia care coordination and patient outcomes and to reduce costs. They will also address novel approaches to measuring the value of innovations in dementia care and treatment, and the impact of dementia on health care and economic decision making. Presenters include Mireille Jacobson, Peter Neumann, and Duke Han.

Session 8: Approaches to Participatory Research and Diverse Recruitment and Retention in Dementia Care Research

Session Co-Chairs: Crystal M. Glover and Cerise Elliott

This session will explore a range of topics related to the practice of scientific inclusion in dementia care/caregiving research across diverse contexts and populations. Presentations will highlight participant-centered and community-based approaches to equitable study design with a focus on outreach, engagement, recruitment, and sustainability. Presenters will explore diversity within diversity as it pertains to addressing challenges and amplifying facilitators of equitable study design and emergent practices for promoting inclusion in the context of caregivers and care recipients that have been under-included in research. Presenters include Jordan Lewis, Fayron Epps, and Van Ta Park.

Plenary Talk: Challenges and Best Practices for Dissemination and Implementation of Interventions for Persons Living with Dementia and their Care Partners

Recent key reports (e.g., AHRQ systematic review and NASEM care interventions report) have noted that behavioral interventions for persons living with dementia and/or their caregivers for which research evidence demonstrates the integral components that drive behavior change and make the intervention successful are lacking. This can be a roadblock to building a cumulative science and widespread dissemination in practice. This plenary talk will highlight opportunities for improving the rigor, reproducibility, and dissemination potential of intervention research. The plenary presentation will be given by Linda Collins.

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Request for Information

NIH published a Request for Information (RFI) to seek input from stakeholders representing various interested communities, including people living with dementia and care partners, researchers, health care providers, and advocacy organizations to inform planning of the 2023 Dementia Care and Caregiving Research Summit. The period for collecting RFI input is now closed.

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Agenda

The meeting will be held virtually March 20-22, 2023. The agenda is forthcoming.

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Registration

Registration for the 2023 Dementia Care & Caregiving Research Summit is now open. The Summit will be held virtually on March 20-22, 2023, from 11 AM to 4pm Eastern Time each day. Submitting the registration form will enable you to join any or all three days of the Summit proceedings.

Register for the Summit

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Media Inquiries

Media inquiries surrounding the Summit should be directed to the NIA Office of Communications and Public Liaison or call (301) 496-1752.

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nia.nih.gov

An official website of the National Institutes of Health