​​​​Welcome to the IMPACT Knowledge Repository, a searchable collection of resources related to pragmatic clinical trials for people living with dementia and their caregivers. For additional content and information visit the IMPACT Collaboratory.


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Perspectives on Evaluating and Measuring Goal-Concordant Care for People Living with Dementia7/10/2024Reports
(Report)  An IMPACT Collaboratory Lived Experience Panel (LEP) report reflecting interaction and outcomes from a series of 3 meetings with the LEP around the insights and lessons learned 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 throughout these meetings 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!
Supporting Mealtime Participation Among People Living With Dementia at Home: Challenges and Strategies for Caregivers7/1/2024Publications/Articles
Manuscript related to CDA -- The purpose of this study was to characterize barriers to mealtime participation among people living with dementia and identify potential caregiver-led strategies to enhance mealtime activities.  the research team used a qualitative descriptive approach and obtained semi-structured interview data from (a) allied health professionals and (b) community-based nutrition program providers who frequently serve people with dementia.
Emotion regulation in people living with dementia and their spouses: the role of neuropsychiatric symptoms6/28/2024Publications/Articles
(Article) Using data from the Wish Outcome Obstacle Plan Study, this study explores whether there is self-awareness of PLWD's difficulties in emotion regulation and whether CP's emotion regulation relates to the PLWD's neuropsychiatric symptoms, potentially revealing bias or interpersonal effects.
Pragmatic Clinical Trials for Dementia Care: Experience from the First 5 Years of the IMPACT Collaboratory6/26/2024Publications/Articles
(Article) IMPACT leadership team reflects on the evolution of the IMPACT Collaboratory, the accomplishments and challenges encountered in the first 5 years, and looks to the future of continued effort in the field with the goal of improving dementia care through embedding pragmatic research.
The Ethical Value of Consulting Community Members in Non-Emergency Trials Conducted with Waivers of Informed Consent for Research6/25/2024Publications/Articles
(Article) In this article, the authors use examples from actual PCTs to argue that prospective consultation with representatives of the target study population can address, or at least mitigate, many of the ethical challenges that waivers of informed consent pose.  We briefly consider what consultation might look like.
Modifications of the Readiness Assessment for Pragmatic Trials tool for appropriate use with Indigenous populations5/31/2024Publications/Articles
This study aimed to identify adaptions necessary for the application of the ‘Readiness Assessment for Pragmatic Trials’ (RAPT) tool in embedded pragmatic randomized, controlled trials (ePCTs) with Indigenous communities.
A comparison of dementia diagnoses and cognitive function measures in Medicare claims and the Minimum Data Set5/30/2024Publications/Articles
(Article)This article describes a study which addresses a critical methodological gap regarding the reliable identification of dementia in large administrative healthcare data. Though the accuracy of previous claims-based algorithms for identifying dementia has been reported in community- and hospital-based samples, few studies have compared the capture of Medicare claims compared to cognitive assessment data in the Minimum Data Set for nursing home residents.
Maintaining the validity of inference from linear mixed models in stepped-wedge cluster randomized trials under misspecified random-effects structures5/29/2024Publications/Articles
Authors describe the value of using variance estimators to circumvent challenges in specifying random effects in research using a stepped wedge design.  Authors review six robust variance estimators that are available for linear mixed models in R, and then describe a comprehensive simulation study to examine the performance of these robust variance estimators for stepped-wedge cluster randomized trials with a continuous outcome under different data generators.
Integrating Health Equity into a National Infrastructure to Support Pragmatic Trials in Dementia Care5/17/2024Publications/Articles
(Article) In 2019, the National Institute on Aging established the IMPACT Collaboratory with a mission to build the nation's capacity to conduct ePCTs of non-pharmacologic interventions in healthcare systems for people living with dementia and their care partners. This report describes IMPACT's efforts to advance health equity during its initial 5 years by supporting research, training investigators, generating knowledge, and engaging partners in the field of ePCTs for dementia care.
Guidance for Proxy Data and Dyadic Analysis5/16/2024Guidance Documents
A guidance document describing essential considerations for using dyadic data and analysis in research with people living with dementia and their care partners.
COVID-19 Vaccines: Moderna And Pfizer-BioNTech Use Varied By Urban, Rural Counties5/1/2024Publications/Articles
(Article) To explore geographic variation within and across US states in the use of Pfizer-BioNTech and Moderna mRNA vaccines, the authors of this paper used a novel data set of CVS Health and Walgreens customers linked to Medicare claims. They found substantial county-level variation in mRNA vaccine products with urban counties showing greater use of Pfizer-BioNTech and rural counties less use of Pfizer-BioNTech for both first doses and booster doses.
Sample size and power calculation for testing treatment effect heterogeneity in cluster randomized crossover designs5/1/2024Publications/Articles
(Article) Authors consider the two-treatment two-period cluster randomized crossover design under either a cross-sectional or closed-cohort sampling scheme, where it is of interest to detect the heterogeneity of treatment effect via an interaction test.  Formulas address unequal cluster sizes and allow researchers to analytically assess the impact of unequal cluster sizes on the power of the interaction test in cluster randomized crossover designs.  Simulations were conducted to confirm the accuracy of the proposed methods, and illustrate their application in two real cluster randomized crossover trials.
Insights into Designing Educational Materials for Persons Living with Dementia: A Focus Group Study4/29/2024Publications/Articles
(Article) In this pilot study, the objective was to solicit feedback from persons living with dementia (PLWD) and their care partners to gain insights into the design of PLWD-facing deprescribing intervention materials and PLWD-facing education material.
Technology Assistance in Dementia (Tech-AiD): A Framework for Care in the Digital Age4/24/2024Publications/Articles
(Article) The author of this paper propose the Technology Assistance in Dementia (Tech-AiD) framework for aiding persons with ADRD and their care partners with using digital technologies to reach individualized goals. They discuss how technology use is impacted by a multitude of factors--including severity of cognitive impairment, technology proficiency, and barriers to adequate and equitable care--and  explore the potential benefits of technology use among patients with ADRD and their care partners.
Best Practice Recommendations for Integrating Health Equity into Pragmatic Clinical Trials for Dementia Care4/10/2024Publications/Articles
(Article) This report describes the development, structure, and content of a guidance document developed by the National Institute on Aging Imbedded Pragmatic AD/ADRD Clinical Trials (IMPACT) Collaboratory to help investigators systematically assess the integration of health equity into all aspects of ePCT design.
Considerations when Designing and Implementing Pragmatic Clinical Trials that Include Older Hispanics4/10/2024Publications/Articles
Article by Rafael Samper-Ternent, MD, PhD and Aanand Naik, MD describes 2 pragmatic clinical trials (PCTs) with respect to recruitment and inclusion of older Hispanics with Alzheimer's Disease and Alzheimer's Disease related dementias and discuss some of the unique challenges associated with conducting PCTs and propose strategies to overcome challenges.
NIA IMPACT Collaboratory (U54) Scientific Conference Agenda4/3/2024Other
NIA IMPACT Collaboratory (U54) Scientific Conference Agenda
Podcast 45: Diagnosed Dementia in Medicare - Benchmarking for Study Planning and Equity3/28/2024Podcasts
In this podcast, Executive Director for the IMPACT Collaboratory Jill Harrison continues the Grand Rounds discussion with Julie Bynum, MD, MPH, about the pros and cons of using healthcare-generated data, as well as the use of population benchmarks in study planning and integrating health equity.
Podcast 45: Diagnosed Dementia in Medicare - Benchmarking for Study Planning and Equity (Transcript)3/28/2024Podcasts
(Transcript) In this podcast, Executive Director for the IMPACT Collaboratory Jill Harrison continues the Grand Rounds discussion with Julie Bynum, MD, MPH, about the pros and cons of using healthcare-generated data, as well as the use of population benchmarks in study planning and integrating health equity.
Grand Rounds 45: Diagnosed Dementia in Medicare: Benchmarking for Study Planning and Equity (Video)3/21/2024Grand Rounds/Webinars
(Video) In this Grand Rounds, Julie Bynum, MD, MPH, shares the pros and cons of using healthcare-generated data--such as Medicare Fee-for-Service and Medicare Advantage--to identify people living with Alzheimer's disease and related dementias, as well as the use of population benchmarcks in study planning and integrating health equity.
Grand Rounds 45: Diagnosed Dementia in Medicare: Benchmarking for Study Planning and Equity (Slides)3/21/2024Grand Rounds/Webinars
(Slides) In this Grand Rounds, Julie Bynum, MD, MPH, shares the pros and cons of using healthcare-generated data--such as Medicare Fee-for-Service and Medicare Advantage--to identify people living with Alzheimer's disease and related dementias, as well as the use of population benchmarcks in study planning and integrating health equity.
CAPRA Data Brief - Health care use patterns among older adults with dementia3/20/2024Reports
IMPACT’s Cameron Gettel, MD and Julie Bynum, MD, MPH are among the authors of the CAPRA Data Brief on health care use patterns among older adults with dementia. The brief was developed by the Center to Accelerate Population Research on Alzheimer’s (CAPRA) at the University of Michigan.

Authors demonstrated the use of Medicare claims to examine healthcare use patterns among older adults with ADRD using datasets provided by the Impact Collaboratory. The brief cites the increase in emergency care, hospitalization, and skilled nursing facility admissions for Medicare recipients and an increased need for planning and care for people with Alzheimer’s Disease and Related Dementias (ADRD) in the U.S.
Pharmacist-Led Telehealth Deprescribing for People Living with Dementia and Polypharmacy in Primary Care: A Pilot Study3/15/2024Publications/Articles
(Article) This paper presents the results on a pilot study of a pharmacist-led intervention to optimize medications with patient-care partner priorities. If scalable, such interventions may optimize goal-concordant care for PLWD.
Podcast 44: Cultural Adaptation of ADRD Clinical Trials for Latino Participants3/5/2024Podcasts
In this podcast, Stacy Fischer, MD, continues the Grand Rounds discussion with Drs. Hanson, Lum, and Ramirez-Gomez about their presentation on barriers to inclusivity in ADRD clinical trials, disparities in caregiving of PLWD, the importance of integrating cultural adaptations and lessons learned from the ADRD-PC trial.
Podcast 44: Cultural Adaptation of ADRD Clinical Trials for Latino Participants (Transcript)3/5/2024Podcasts
(Transcript) In this podcast, Stacy Fischer, MD, continues the Grand Rounds discussion with Drs. Hanson, Lum, and Ramirez-Gomez about their presentation on barriers to inclusivity in ADRD clinical trials, disparities in caregiving of PLWD, the importance of integrating cultural adaptations and lessons learned from the ADRD-PC trial.
COVID-19 and influenza vaccine co-administration among older US adults2/23/2024Publications/Articles
(Article) Coadministering COVID-19 and influenza vaccines is recommended by public health authorities and intended to improve uptake and convenience; however, the extent of vaccine coadministration is largely unknown. Investigations into COVID-19 and influenza vaccine coadministration are needed to describe compliance with newer recommendations and to identify potential gaps in the implementation of coadministration.
The NIA IMPACT Collaboratory: history, impact, challenges, and the future of conducting ePCTs to improve dementia care2/16/2024Publications/Articles
(Article) In recognition of the 50th anniversary of the National Institute on Aging (NIA), the authors commemorate the NIA’s response to the charge from Congress to identify effective and comprehensive programs to meet the urgent and complex public health needs of Americans impacted by Alzheimer’s disease and Alzheimer’s disease-related dementias (AD/ADRD), a group of irreversible and progressive brain disorders that destroy a person’s memory and thinking skills.
Grand Rounds 44: Cultural adaptation of ADRD clinical trials for Latino participants (Video)2/16/2024Grand Rounds/Webinars
(Video) In this Grand Rounds, Drs Hanson, Lum, Ramirez-Gomez, and Fischer, discuss barriers to inclusivity in ADRD clinical trials, disparities in caregiving of PLWD, the importance of integrating cultural adaptations and lessons learned from the ADRD-PC trial.
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