Providers’ Perspectives on High-Quality Dementia Care in Long-Term Care
September 2, 2022
Author: Sonya Sutton
NIH Collaboratory Webinar Series on Ethics and Regulatory Challenges in Pragmatic Clinical Trials starts September 9th
The NIH Pragmatic Trials Collaboratory is holding a special Grand Rounds series to examine ethical and regulatory challenges in pragmatic clinical trials. Over the past decade, the program’s Ethics and Regulatory Core has worked with investigators to navigate ethical and regulatory complexities associated with research conducted within healthcare systems. With this new Grand Rounds series, the Core is bringing together bioethicists, investigators, and regulatory experts to share lessons learned, discuss empirical findings, and explore remaining uncertainties.
The webinar series, Ethical and Regulatory Dimensions of Pragmatic Clinical Trials, will kick off on Friday, September 9, at 1:00 pm ET with a keynote presentation by Steven Joffe, MD, MPH, of the University of Pennsylvania and Executive Committee member of the IMPACT Ethics and Regulation Core. Sessions will continue on the second Friday each month through February 2023 and include presentations from IMPACT executive committee members including: Monica Taljaard, PhD and Emily Largent, JD, PhD, RN. Attendance is free and open to the public. Learn more and view the full schedule.
IMPACT Lived Experience Panel releases two reports on research study outcomes and ethics in ePCTs for PLWD and their care partners
Reports from the first two series of meetings with the IMPACT Lived Experience Panel (LEP) are now available on the IMPACT website. The two reports share highlights and insights gained during meetings with the LEP facilitated by IMPACT’s Patient Caregiver Relevant Outcomes Core and the Ethics and Regulation Core in the first cycle of the Lived Experience Panel. The LEP reflects a coordinated effort between the IMPACT Collaboratory and the Alzheimer’s Association.
The 2021-2022 Lived Experience Panel Report: Priorities for Person and Caregiver Relevant Outcomes in Dementia Intervention Research, by Antonia V. Bennett, PhD, Laura C. Hanson, MD, MPH, Gary Epstein-Lubow, MD, Sheryl Zimmerman, PhD, summarizes the discussions with the Lived Experience Panel and members from the Patient Caregiver Relevant Outcomes Core about research study outcomes that are important to people living with dementia and their care partners.
The 2021-2022 Lived Experience Panel Report: Ethical Challenges in Conducting Research Using a Waiver of Informed Consent with People Living with Dementia, by Emily Largent, PhD, JD, RN, Jason Karlawish, MD Steve Joffe, MD, MPH, Gary Epstein-Lubow, MD, documents the insights gained from two meetings between members of IMPACT’s Ethics and Regulation Core and the Lived Experience Panel, featuring conversations regarding the ethical challenges related to conducting embedded pragmatic clinical trials among people living with dementia and their care partners using waivers of informed consent.
Center for Aging and Serious Illness offers Dementia Palliative Care Clinical Trials Training Program
The Center for Aging and Serious Illness (CASI) is offering a ten-month training program for early- to mid-career researchers and health professionals interested in developing competence in the planning, design, and execution of randomized clinical trials in persons with Alzheimer’s Disease or Related Dementias (ADRD). The program will include a combination of webinars, small group sessions, and a five-day in-person Institute where learners will work together to design a trial. Learners will also develop their own grant application addressing ADRD.
Key dates for the training program are as follows:
- Applications Due: September 2, 2022
- A week-long in-person meeting, also called “The Institute”: January 9 – 13, 2023
- Bi-Monthly Workshops: February – April 2023
- Introductory Webinar: August 18 at 3:30-4pm ET
- Introductory Webinar: August 22 at 9:30-10am ET
To learn more about the CASI Dementia Palliative Care Clinical Trials Training Program and to register for the Introductory webinars, visit The Center for Aging and Serious Illness (CASI)
Mor named to CBO Panel of Health Advisers
NIA IMPACT multiple principal investigator Vincent Mor, PhD, has been named to the Congressional Budget Office (CBO) Panel of Health Advisers.
The panel is a group of widely recognized experts in health policy and the health care sector who provide feedback and recommendations to the CBO. Panelists usually serve three-year terms, and meet in person once a year as well as advise the CBO in-between meetings for tasks such as developing analytic questions and preparation of studies.
Dr. Mor joins 21 other experts on the panel. The full list of panelists can be found at this link.
IMPACT Collaboratory members participate in 2022 AAIC
The IMPACT Collaboratory had a strong presence at the 2022 Alzheimer’s Association International Conference, held July 30-August 4, in San Diego, CA.
Members of the IMPACT Administration Core led a pre-conference workshop on July 29th designed to share key considerations in the design and conduct of embedded pragmatic clinical trials for persons living with dementia. IMPACT members who organized and led the workshop included Jill Harrison, PhD, Vincent Mor, PhD, Partha Bhattacharyya, PhD, Marcel Salive, MD, MPH, Kenneth Hepburn, PhD, María Aranda, PhD, MSW, MPA, LCSW, Ellen McCreedy, PhD, MPH, David Reuben, MD, Deborah Barnes, PhD, MPH, and Joseph Gaugler, PhD.
Peggye Dilworth-Anderson, PhD, a member of IMPACT’s Executive Committee and Health Equity Team, received the Bengt Winblad Lifetime Achievement Award in Alzheimer's Disease Research at the conference. The award recognizes a senior investigator whose contributions have shown a lasting impact on the field and whose body of work has demonstrated a career-long commitment towards progress against Alzheimer's and dementia.
IMPACT member presentations included:
Katie Brandt, MM, presented, "Courage in Care Planning: Advance Care Planning Readiness in the Context of COVID-19 for Caregivers of Individuals Living with Dementia"
Emily Largent, PhD, JD, RN, presented, "Participant First: Improving Communication with and Support for Participants in Trials that End Early"
Susan Mitchell, MD, MPH, presented, "Using Embedded Pragmatic Clinical Trials to Improve Dementia Care"
Vince Mor, PhD, presented, “NIA AD/ADRD IMPACT Collaboratory: Expanding Pragmatic Trials in Health Systems”
Brent P. Forester, MD, MSc, co-authored three abstracts:
- Pilot Trial of Dronabinol Adjunctive Treatment of Agitation in Alzheimer’s Disease (THC-AD)
- Identifying delirium in advanced dementia in the ECT-AD clinical trial
- Projection in Proxy Assessments of Everyday Preferences for Persons with Cognitive Impairment
Notice of Intent (NOI) to Publish Two New Funding Opportunities on August 1, 2022
The IMPACT Collaboratory is pleased to announce plans to publish new Requests for Applications (RFA) for Pilot Grants and Demonstration Projects on August 1, 2022*. Letters of Intent for both opportunities are due mid-September 2022.
*August 1st is the new RFA release date. This date has been modified from the original date, which was August 15th.
Pilot Grants Program
IMPACT funds one-year awards of pilot pragmatic clinical trials (ePCTs) that test non-pharmacological interventions embedded in health care system(s) for people living with Alzheimer’s Disease (AD) and AD-related dementias (ADRD) and their care partners. The goal of these pilot studies is to generate the preliminary data necessary to design and conduct a future full-scale Stage IV effectiveness ePCT (based on the NIH Stage Model). Learn more about previous awardees at this link.
In this cycle, priority will be given to applications for interventions in this population that aim to:
• Reduce inequities in health care
• Reduce potentially inappropriate medications through de-prescribing
• Improve care in the emergency department
Demonstration Projects Program
IMPACT funds 18-month Demonstration Projects designed as full-scale, Stage IV effectiveness ePCTs (based on the NIH Stage Model) that test, measure and evaluate the effect of a care delivery intervention program in health care systems for people living with ADRD and their care partners. The goal of these Demonstration Projects is to generate evidence on effective care delivery practices that can be expanded and/or implemented in other systems. The intervention will typically encompass relatively simple system changes or direct patient outreach, or successfully piloted programs ready for testing at scale. Demonstration Projects allow health care systems and investigators to gain real-world experience integrating pragmatic non-pharmacologic interventions into usual clinical workflow and health care delivery practices in a controlled manner that provides clear information on the impact of the intervention program. Learn more about previous awardees at this link.
Updates on these two RFAs will be posted on the Grants and Training Programs page.
New video shares Health Care Systems Scholar Dr. Hillary Lum’s experience creating a research program to improve dementia care
Hillary Lum, MD, PhD, IMPACT Health Care System Scholar, has created a brief video sharing the story of her 1-year journey with The University of Colorado UC Health preparing to conduct real world research to improve dementia care.
The brief video describes the goals and progress over the last year as Dr. Lum and her colleagues developed a program to improve dementia care by improving communication and care communication in dementia care by using health information tools such as patient portals.
Dr. Hillary Lum Shares Her Experience Developing a Program to Conduct Real-World Research in People Living with Dementia from NIA IMPACT Collaboratory on Vimeo.