Pragmatic Clinical Trials for Dementia Care: Experience from the First 5 Years of the IMPACT Collaboratory.

The IMPACT Collaboratory is a national infrastructure and resource dedicated to transforming dementia care in real-world environments for millions of Americans and their care partners, using embedded pragmatic clinical trials. This new approach of applied clinical research holds the promise of accelerating the science of dementia care, improving relevancy of interventions to real-world partners, promoting health equity, and closing the gaps between research, everyday clinical practice, and lived experiences of people living with dementia and their care partners.

Patients with dementia or frailty undergoing major limb amputation have poor outcomes.

Objective: Major lower limb amputation is a disfiguring operation associated with impaired mobility and high near-term mortality. Informed decision-making regarding amputation requires outcomes data. Despite the co-occurrence of both chronic limb-threatening ischemia (CLTI) and Alzheimer's disease and related dementias (ADRD), there is sparse data on the outcomes of major limb amputation in this population and the impact of frailty.

Process of Withdrawal of Mechanical Ventilation at End of Life in the ICU: Clinician Perceptions.

Background: Nearly one-quarter of all Americans die in the ICU. Many of their deaths are anticipated and occur following the withdrawal of mechanical ventilation (WMV). However, there are few data on which to base best practices for interdisciplinary ICU teams to conduct WMV.

Best Practice Recommendations for Integrating Health Equity into Pragmatic Clinical Trials for Dementia Care.

Context: Minoritized populations experience higher rates of dementia and worse health outcomes than non-Hispanic white people, but they are vastly underrepresented in pragmatic clinical trials embedded in health care systems (ePCTs). Little guidance is available to consider health equity-relevant issues in ePCTs.

Objective: 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.

Hip Fracture Treatment and Outcomes Among Community-Dwelling People Living With Dementia.

Importance: The decision for surgical vs nonsurgical treatment for hip fracture can be complicated among community-dwelling people living with dementia.

Objective: To compare outcomes of community-dwelling people living with dementia treated surgically and nonsurgically for hip fracture.

Design, Setting, And Participants: This retrospective cross-sectional study undertook a population-based analysis of national Medicare fee-for-service data.

Development and External Validation of Models to Predict Need for Nursing Home Level of Care in Community-Dwelling Older Adults With Dementia.

Importance: Most older adults living with dementia ultimately need nursing home level of care (NHLOC).

Objective: To develop models to predict need for NHLOC among older adults with probable dementia using self-report and proxy reports to aid patients and family with planning and care management.

Design, Setting, And Participants: This prognostic study included data from 1998 to 2016 from the Health and Retirement Study (development cohort) and from 2011 to 2019 from the National Health and Aging Trends Study (validation cohort).

Evidence Guiding Withdrawal of Mechanical Ventilation at the End of Life: A Review.

Objective: Distress at the end of life in the intensive care unit (ICU) is common. We reviewed the evidence guiding symptom assessment, withdrawal of mechanical ventilation (WMV) process, support for the ICU team, and symptom management among adults, and specifically older adults, at end of life in the ICU.

Setting And Design: Systematic search of published literature (January 1990-December 2021) pertaining to WMV at end of life among adults in the ICU setting using PubMed, Embase, and Web of Science.

Staff and Proxy Views of Multiple Family Member Involvement in Decision Making for Nursing Home Residents With Advanced Dementia.

Decision making for nursing home (NH) residents with Alzheimer disease and related dementias often involves input from multiple family members and NH staff to address goals of care at the end of life. Using data from the Assessment of Disparities and Variation for Alzheimer's disease Nursing home Care at End of life research study, a secondary analysis of qualitative data was conducted involving interviews of 144 NH staff and 44 proxies in 14 NHs to examine the perspectives of NH staff and proxies for NH residents with Alzheimer disease and related dementias on the involvement of multiple family members in decision making about end-of-life care decisions. Interviews took place between 2018 and 2021.

Black and white proxy experiences and perceptions that influence advanced dementia care in nursing homes: The ADVANCE study.

Background: Regional, facility, and racial variability in intensity of care provided to nursing home (NH) residents with advanced dementia is poorly understood.

Materials And Methods: Assessment of Disparities and Variation for Alzheimer's disease NH Care at End of life (ADVANCE) is a multisite qualitative study of 14 NHs from four hospital referral regions providing varied intensity of advanced dementia care based on tube-feeding and hospital transfer rates. This report explored the perceptions and experiences of Black and White proxies (N = 44) of residents with advanced dementia to elucidate factors driving these variations.

Health equity considerations in pragmatic trials in Alzheimer's and dementia disease: Results from a methodological review.

Introduction: To improve dementia care delivery for persons across all backgrounds, it is imperative that health equity is integrated into pragmatic trials.

Methods: We reviewed 62 pragmatic trials of people with dementia published 2014 to 2019. We assessed health equity in the objectives; design, conduct, analysis; and reporting using PROGRESS-Plus which stands for Place of residence, Race/ethnicity, Occupation, Gender/sex, Religion, Education, Socioeconomic status, Social capital, and other factors such as age and disability.

End-Of-Life Care in the Potential Donor after Circulatory Death: A Systematic Review.

Background: Donation after circulatory death (DCD) is becoming increasingly common, yet little is known about the way potential donors receive end-of-life care.

Purpose: The aims of this systematic review are to describe the current practice in end-of-life care for potential donors and identify metrics that are being used to assess discomfort among these patients.

Research Design And Study Sample: This review encompasses published literature between June 1, 2000 and June 31, 2020 of end-of-life care received by potential DCD patients.

Ethical analysis of vulnerabilities in cluster randomized trials involving people living with dementia in long-term care homes.

Cluster randomized trials (CRT) of non-pharmacological interventions are an important means of improving the quality of care and quality of life of people living with dementia (PLWD) in long-term care (LTC) homes. PLWD in LTC homes are, however, vulnerable in manifold ways. Therefore, researchers require guidance to ensure that the rights and welfare of PLWD are protected in the course of this valuable research.

Design Considerations for Embedded Pragmatic Clinical Trials of Advance Care Planning Interventions for Persons Living With Dementia.

Advance care planning (ACP) is an important part of comprehensive care for persons living with dementia (PLWD). While many trials have established the efficacy of ACP in improving end-of-life communication and documentation of care preferences, there remains a gap in clinical usage. Embedded pragmatic clinical trials (ePCTs) may facilitate the uptake of evidence-based care into existing healthcare by deploying efficacious ACP interventions into real-world settings.

Development and External Validation of a Mortality Prediction Model for Community-Dwelling Older Adults With Dementia.

Importance: Estimating mortality risk in older adults with dementia is important for guiding decisions such as cancer screening, treatment of new and chronic medical conditions, and advance care planning.

Objective: To develop and externally validate a mortality prediction model in community-dwelling older adults with dementia.

Design, Setting, And Participants: This cohort study included community-dwelling participants (aged ≥65 years) in the Health and Retirement Study (HRS) from 1998 to 2016 (derivation cohort) and National Health and Aging Trends Study (NHATS) from 2011 to 2019 (validation cohort).

Feasibility of Measuring Frailty and Patient-Reported Outcomes During and After Post-Acute Skilled Nursing Facility Rehabilitation.

Functional status and quality of life are not routinely assessed after skilled nursing facility (SNF) discharge. We determined feasibility of measuring frailty among adults ≥65 years admitted to SNF after hospitalization, and post-discharge outcomes. We calculated a frailty index (non-frail [≤0.

The design and conduct of a pragmatic cluster randomized trial of an advance care planning program for nursing home residents with dementia.

Background/aims: A significant number of people with Alzheimer's disease or related dementia diagnoses will be cared for in nursing homes near the end of life. Advance care planning (ACP), the process of eliciting and documenting patient-centered preferences for care, is considered essential to providing high quality care for this population. Nursing homes are currently required by regulations to offer ACP to residents and families, but no training requirements exist for nursing home staff, and approaches to fulfilling this regulatory and ethical responsibility vary.

ADVANCE-C: A Qualitative Study of Experiences Caring for Nursing Home Residents with Advanced Dementia During the COVID-19 Pandemic.

Objectives: Assessment of Disparities and Variation for Alzheimer's disease Nursing home Care at End of life (ADVANCE) is a multisite qualitative study of regionally diverse Nursing homes (NHs; N = 14) providing varied intensity of advanced dementia care. ADVANCE-C explored the experiences of NH staff and proxies during the COVID-19 pandemic.

Methods: Data collection occurred in five of the ADVANCE facilities located in Georgia (N = 3) and New York (N = 2).

Pain Impacting Quality of Life in Persons with Dementia Dying in the Nursing Home by Alternative Medicare Payment Model.

Medicare alternative payment models were created to improve health care value by controlling costs and improving care quality. To determine if prevalence of pain affecting quality of life (QoL) differs by Medicare payment model among nursing home (NH) decedents with dementia at the end of life. NH decedents in 2017/2018 in the United States with dementia who self-reported pain on a Minimum Data Set assessment in the last 30 days of life.

Ethical considerations within pragmatic randomized controlled trials in dementia: Results from a literature survey.

Introduction: This review aims to describe the landscape of pragmatic randomized controlled trials (RCTs) in the context of Alzheimer's disease (AD) and related dementias with respect to ethical considerations.

Methods: Searches of MEDLINE were performed from January 2014 until April 2019. Extracted information included: trial setting, interventions, data collection, study population, and ethical protections (including ethics approvals, capacity assessment, and informed consent).