News

New IMPACT Lived Experience Panel Report | Perspectives on Evaluating and Measuring Goal-Concordant Care for People Living with Dementia

Posted on by Erin Luers

Introducing the 2023-2024 Lived Experience Panel Report: Perspectives on Evaluating and Measuring Goal-Concordant Care for People Living with Dementia by IMPACT and LEP members including Joshua Niznik, Antonia Bennett, Natalie C. Ernecoff, Sheryl Zimmerman, Kathryn Wessell, Laura Hanson, Gary Epstein-Lubow, Carolyn Malone, Willetha Barnette, Bart Brammer, Katie Brandt, Roberta Cruz, Monica Downer, Darrell Foss, LuPita Gutierrez-Parker, Freddye G. James, Judith S. Rocha, Anthony Wagner.

The report describes the insights and lessons learned from a series of 3 meetings between the IMPACT Lived Experience Panel and members of the Patient and Caregiver Relevant Outcomes Core.  The topic of discussion was goal-concordant care as it occurs in the real world and as it is measured in research. Panel members discussed their experiences talking about their goals of care with their healthcare providers and how thinking about their goals could help them make healthcare decisions.   Discussions unveiled some surprising discordance between panel members’ experiences and researcher expectations, which resulted in a series of challenges and recommendations for future efforts.

Read the full report to learn more!

IMPACT members presenting at Alzheimer’s Association International Conference (AAIC)

Posted on by Jeannine Sato

Leah Hanson, PhD, Heather Allore, PhD, and Yaideliz Romero-Ramos, MPH, will present during the AAIC 24 Conference held online and in Philadelphia, Pennsylvania, July 28 through August 1, 2024.

Dr. Leah Hanson will share details about her IMPACT-funded research in her poster presentation: A Pilot Pragmatic Trial of Mindfulness Based Dementia Care for Care Partners on July 30 within the Dementia Care Research and Psychosocial Factors: Dementia Care Research section of the program

Dr. Heather Allore will represent the Journal of the American Medical Association (JAMA) during the Internal Medicine at JAMA Network breakfast on July 30 and she will participate in the Ask a Statistician Roundtable on July 31.

Yaideliz Romero-Ramos, MPH, will virtually present during the poster session, sharing a summary of how IMPACT’s Lived Experience Panel members have collaborated with investigators to advance engagement in pragmatic clinical trials of dementia care.

View the entire AAIC program and register.

IMPACT members publish two articles on best practices for health equity in pragmatic trials in Ethnicity & Disease special report

Posted on by Jeannine Sato

IMPACT members Rafael Samper-Ternent, MD, PhD and Susan Mitchell, MD, MPH are primary authors in the recently published Original Report: Pragmatic Trials Among Older Adults by the publication Ethnicity & Disease. The articles provide best practices for health equity in embedded pragmatic clinical trials(ePCTs) for dementia care.

Considerations When Designing and Implementing Pragmatic Clinical Trials That Include Older Hispanics by Dr. Samper-Ternent, IMPACT Pilot Study awardee, Aanand D. Naik, MD and others describes health equity practices for older Hispanic adults with Alzheimer disease and related dementias (ADRDs). The authors provide data from two PCTs about the recruitment of older Hispanics with ADRDs and discuss unique challenges associated with conducting PCTs and propose strategies to overcome challenges.

Best Practice Recommendations for Integrating Health Equity into Pragmatic Clinical Trials for Dementia Care by IMPACT’s Susan Mitchell, MD, MPH, Ellen McCarthy, PhD, MPH, Ladson Hinton, MD, Ana Quiñones, PhD, Katherine Peak, MPH, and IMPACT faculty scholar Manka Nkimbeng, PhD, MPH, RN, describes the development, structure, and content of a guidance document developed by the IMPACT Collaboratory to help investigators integrate health equity into all aspects of ePCTs designed for people living with dementia.