Providers’ Perspectives on High-Quality Dementia Care in Long-Term Care
September 2, 2022
Stakeholder Engagement
Decadal Survey of Behavioral and Social Science Research on Alzheimer’s Disease and Alzheimer’s Disease-Related Dementias
At the request of the National Institute on Aging of the U.S. Department of Health and Human Services, Reducing the Impact of Dementia in America assesses the contributions of research in the social and behavioral sciences and identifies a research agenda for the coming decade. This report offers a blueprint for the next decade of behavioral and social science research to reduce the negative impact of dementia for America’s diverse population. Learn more at this link.
The Patient-Centered Outcomes Research Institute (PCORI)
PCORI is a leader in driving US clinical research to becomes more patient-centered. They are committed to ensuring that patients and other healthcare stakeholders are involved throughout the research process, offering awards to promote engagement in research, dissemination and implementation projects, methodology research, and the development of research infrastructure.
Best Practice Caregiving | Guiding Organizations to Dementia Programs for Family Caregivers
Best Practice Caregiving is a free online database of proven dementia programs for family caregivers. It offers a searchable, interactive, national database of vetted, effective programs that offer much-needed information and support. The database is an invaluable tool for healthcare and community-based organizations, as well as funders and policy makers to discover and share high quality programs for caregivers.
LiveWell Dementia Specialists
LiveWell Dementia Specialists (formerly the Alzheimer’s Resource Center) is a nonprofit of care providers, researchers, and pioneers in dementia care. The organization is dedicated to providing support and education to people living with dementia, their caregivers, and care and research professionals through various resources, courses, training, and events.
Stakeholder Engagement Navigator | DICEmethods.org
A stakeholder engagement navigator guide for health researchers focusing on Dissemination, Implementation, Communication, and Engagement (DICE)
NIH Pragmatic Trials Collaboratory and Living Textbook
The NIH Pragmatic Trials Collaboratory aims to improve the way clinical trials are conducted by creating a new infrastructure for collaborative research with healthcare systems, ultimately ensuring that healthcare providers and patients can make decisions based on the best available clinical evidence. The Collaboratory supports the design and rapid execution of pragmatic clinical trial Demonstration Projects to address questions of major public health importance and engage healthcare delivery systems in research partnerships. The Collaboratory also provides training resources on how to design, conduct, and disseminate embedded pragmatic clinical trials (ePCTs).
Partnering with People Living with Dementia and Care Partners in Embedded Pragmatic Clinical Trials
December 2021 – Grand Rounds 22 features a panel of participants sharing their experiences in stakeholder engagement in ePCTs for people living with AD/ADRD and their care partners. Perspectives shared include that of a researcher, a stakeholder engagement expert and people living with dementia.
Speakers
Gary Epstein-Lubow, MD
Team Leader, IMPACT Engaging Partners Team
Associate Professor of Psychiatry and Human Behavior
Associate Professor of Medical Science, Alpert Medical School of Brown University
Associate Professor of Health Services, Policy and Practice, Brown University School of Public Health
Heidi Gil
Executive Committee Member,
IMPACT Engaging Partners Team
Chief Strategy Officer, LiveWell
Learning Objectives
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- Understand the need/benefits of engaging people living with dementia and care partners in every aspect of dementia care research
- Identify how all stakeholders can be empowered and engaged as co-partners in research
- Explore lessons learned and resources available to conduct research differently