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The 2023-2024 Lived Experience Panel Report: Perspectives on Evaluating and Measuring Goal-Concordant Care for People Living with Dementia

Posted on by Erin Luers

July 10, 2024

Authors: Joshua Niznik, PharmD, PhD, Antonia Bennett, PhD, Natalie C. Ernecoff, PhD, MPH, Sheryl Zimmerman, PhD, Kathryn Wessell, MPH, Laura Hanson, MD, Gary Epstein-Lubow, MD, MPH, Carolyn Malone, MPH, Willetha Barnette, Bart Brammer, Katie Brandt, Roberta Cruz, Monica Downer, Darrell Foss, LuPita Gutierrez-Parker, Freddye G. James, Judith S. Rocha, Anthony Wagner

Description: This report describes the major lessons learned from a series of discussions between people living with dementia, care partners, researchers, healthcare providers, and other community members about ways to improve the quality of healthcare for people living with dementia. The main topic of these discussions was ‘goal-concordant care’ which means ensuring that healthcare treatments and decisions are in line with what matters most to patients and families. Panel members were asked to discuss their experiences talking about goals with their healthcare providers and how thinking about their goals could help with making healthcare decisions. Some key takeaway points are:

  1. Decision-making for people living with dementia is more often driven by needs and priorities, than by healthcare “goals.”
  2. Decision-making for people living with dementia involves many people, which is not often reflected in research.
  3. It can be difficult for people living with dementia and care partners to feel actively involved in healthcare decision-making.

Further study is needed to identify strategies to ensure that people living with dementia and care partners are actively involved in decision-making and in identifying the best ways to measure whether the needs and priorities of people living with dementia and care partners are being met.

Read the full report here.

Citation: Niznik J, Bennett A, Ernecoff NC, Zimmerman S, Wessell K, Hanson L, Epstein-Lubow G, Malone C, Barnette W, Brammer B, Brandt K, Cruz R, Downer M, Foss D, Gutierrez-Parker L, James FG, Rocha JS, Wagner A. 2023-2024 Lived Experience Panel Report: Perspectives on Evaluating and Measuring Goal-Concordant Care for People Living with Dementia. NIA IMPACT Collaboratory; 2024. doi: 10.58234/35429703
Click to view LEP Report | PCRO Goal-Concordant Care

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.