Role of nurse practitioners in comprehensive alzheimer's disease care: Barriers and opportunities for timely diagnosis.

Alzheimer's disease (AD) is a progressive neurodegenerative disease. Treatments include disease-modifying therapies (DMTs), which studies showed are most effective when initiated during the early disease stages. Timely AD diagnosis is therefore important, as DMTs can potentially extend an acceptable quality of life for people with this condition.

Predictors of Decisional Capacity in Alzheimer's Disease Biomarker Test Candidates.

Background: Deciding to learn one's Alzheimer's disease (AD) biomarker status is a high-stakes endeavor that requires comprehending and deliberating about complex and nuanced information. Assessing capacity to consent to AD biomarker testing and disclosure is further complicated when candidates have cognitive impairment and present with family care partners.

Objective: The objective of this analysis was to identify predictors of decisional capacity for an amyloid Positron Emission Tomography (PET) disclosure study among persons with mild cognitive impairment (MCI) and their family care partners.

Dignity in people with dementia: A concept analysis.

Dignity, an abstract and complex concept, is an essential part of humanity and an underlying guiding principle in healthcare. Previous literature indicates dignity is compromised in people with dementia (PwD), but those PwD maintain the capacity to live with dignity with appropriate external support. Alzheimer's disease and related dementias (ADRDs) lead to progressive functional decline and increased vulnerability and dependence, leading to heightened risks of PwD receiving inappropriate or insufficient care that diminishes dignity.

COVID-19 pandemic's relationship with enrollment at US Alzheimer's Disease Research Centers.

Introduction: We aimed to characterize the COVID-19 pandemic's relationship with enrollment in US Alzheimer's Disease Research Centers (ADRCs).

Methods: Using data on 10,105 participants from 30 ADRCs, we conducted interrupted time series analyses to assess the relationship of the pandemic with enrollment and calculate projected dates of enrollment recovery.

Results: Participants enrolled during the pandemic (vs pre-pandemic) were more likely to have dementia and be referred by health professionals.

"And Does That Necessarily Mean Absolutely Alzheimer's?" An Analysis of Questions Raised Following Amyloid PET Results Disclosure.

Introduction: Amyloid PET scans provide individuals with mild cognitive impairment (MCI) information about their risk of progressing to Alzheimer's dementia (AD). Given the wide-ranging implications of this information, best practice guidelines are needed to support researchers and clinicians disclosing these high-stakes test results. To inform the development of such guidelines, this analysis aims to describe questions and concerns raised during the disclosure of amyloid PET results in the context of MCI.

Nurse-led pre-test counseling for Alzheimer's disease biomarker testing: Knowledge and skills required to meet the needs of patients and families.

Introduction: Biomarker testing for Alzheimer's disease and related disorders (ADRD) brings new opportunities for nurses to foster shared decision-making by leading pre-test counseling (PTC) for patients and families.

Methods: Audio-recordings of 18 nurse-led PTC sessions were analyzed to characterize questions posed by patient and family members dyads considering whether to pursue amyloid positron emission tomography.

Results: Sessions lasted 20 to 75 minutes and generated rich discussion of the purpose and potential implications of amyloid imaging.

Retention of Study Partners in Longitudinal Studies of Alzheimer Disease.

Background: Study partners are required for all participants at Alzheimer's Disease Research Centers (ADRCs). Study partners' attitudes and beliefs may contribute to missed visits and negatively impact retention of participants in longitudinal AD studies.

Objective: Study partners (N = 212) of participants (Clinical Dementia Rating® [CDR]≤2) at four ADRCs were randomly surveyed to examine their facilitators and barriers to continued participation in AD studies.

Do Individuals Aged 50 or Older View Cognitive Conditions Differently Than Physical Conditions? Evidence From a Pooled Analysis of Illness Perceptions in Type 2 Diabetes and Mild Cognitive Impairment.

Background And Objectives: Type 2 diabetes (T2DM) and mild cognitive impairment (MCI) are common late-life physical and cognitive health conditions. Illness perceptions, an individual's personal beliefs about the conditions, should be explored in the context of disease characteristics (physical or cognitive). This secondary analysis explored illness perceptions with a priori hypotheses about control (perceived controllability) and coherence (perceived understanding) dimensions among persons with T2DM and MCI, treating each as an exemplar of late-life physical and cognitive health conditions.

Mechanisms by Which Cultural-Centric Narrative Influences Interest in ADRD Research Among African American Adults.

Background And Objectives: Insufficient ethnoracial diversity is a pervasive challenge in Alzheimer's disease (AD) research. The Recruitment Innovations for Diversity Enhancement (RIDE) is grounded in the premise that culturally informed narratives of research participation can inspire individuals from a given culture-sharing group to consider research enrollment. This study examines factors associated with interest in AD research among Black or African American adults following exposure to RIDE narrative campaign materials.

Psychometric Evaluation of the Perceived Research Burden Assessment (PeRBA) in Longitudinal Studies of Alzheimer Disease Using Rasch Analysis.

Introduction: The Perceived Research Burden Assessment (PeRBA) was developed to measure participant perceptions of burden in research studies. This study aimed to examine the psychometric properties of this assessment using Rasch analysis in participants in the longitudinal studies of the Alzheimer disease (AD) and their family members.

Methods: PeRBA was administered to 443 participants in studies of AD and 212 family members across 4 Alzheimer Disease Research Centers.

The Advisory Group on Risk Evidence Education for Dementia: Multidisciplinary and Open to All.

The brain changes of Alzheimer's disease and other degenerative dementias begin long before cognitive dysfunction develops, and in people with subtle cognitive complaints, clinicians often struggle to predict who will develop dementia. The public increasingly sees benefits to accessing dementia risk evidence (DRE) such as biomarkers, predictive algorithms, and genetic information, particularly as this information moves from research to demonstrated usefulness in guiding diagnosis and clinical management. For example, the knowledge that one has high levels of amyloid in the brain may lead one to seek amyloid reducing medications, plan for disability, or engage in health promoting behaviors to fight cognitive decline.

Perceptions of Research Burden and Retention Among Participants in ADRC Cohorts.

Objectives: Alzheimer disease (AD) and related dementias clinical research is associated with significant participant burden. The Perceived Research Burden Assessment (PeRBA) measures participants' perceptions of logistical, psychological, and physical burdens. The purpose of this study was to assess PeRBA's psychometric properties, perceptual sources, and behavioral consequences with participants in a multisite study of participant retention in longitudinal cohort studies of Alzheimer disease and related dementias.

Retaining Participants in Longitudinal Studies of Alzheimer's Disease.

Background: Retention of study participants is essential to advancing Alzheimer's disease (AD) research and developing therapeutic interventions. However, recent multi-year AD studies have lost 10% to 54% of participants.

Objective: We surveyed a random sample of 443 participants (Clinical Dementia Rating [CDR]≤1) at four Alzheimer Disease Research Centers to elucidate perceived facilitators and barriers to continued participation in longitudinal AD research.

Willingness to Participate in Clinical Research Among Individuals With Cognitive Impairment.

This secondary analysis examined (1) factors associated with willingness to participate in clinical research for cognitive health among individuals with cognitive impairment and their care partners, and (2) concordance regarding such willingness between individuals with cognitive impairment and their care partners (dyads). Neuropsychological factors and willingness to participate in clinical research were collected using self-reported questionnaires. Participants' sociodemographic and clinical information was extracted from the University of Pittsburgh Alzheimer's Disease Research Center record.

A Blood Test for Alzheimer's Disease: It's about Time or Not Ready for Prime Time?

A blood test for Alzheimer's disease is now available for clinical use in persons with cognitive impairment. This is an extraordinary milestone, though the amyloid-based PrecivityAD™ test is not without limitations. Pre and post-test counseling are essential.

Do Perceptions of Cognitive Changes Matter in Self-Management Behaviors Among Persons With Mild Cognitive Impairment?

Background And Objectives: This secondary analysis examined (a) the association between illness perceptions (perceived understanding and cause of mild cognitive impairment [MCI]) and self-management behaviors for cognitive health, and (b) whether sociodemographic and clinical factors moderate such relationships among persons with MCI.

Research Design And Methods: We conducted a cross-sectional study of 85 participants using baseline data from the Return of Amyloid Imaging Scan Results Study. The coherence and causality subscales of the Revised Illness Perceptions Questionnaires were used.

Association Between the APOEɛ2/ɛ4 Genotype and Alzheimer's Disease and Mild Cognitive Impairment Among African Americans.

We examined the association between APOEɛ2/ɛ4 with incident Alzheimer's disease (AD) and mild cognitive impairment (MCI) among African Americans using the national dataset from the National Alzheimer's Coordinating Center (NACC) from 2005 to September 2019. Compared to ɛ3/ɛ3 carriers, ɛ2/ɛ4 carriers exhibited a similar risk of incident AD (adjusted hazard ratio [aHR] = 0.85, 95% CI [0.

Ethical Considerations in Communicating Alzheimer's Disease Neuroimaging Biomarker Test Results to Symptomatic Individuals.

This article examines ethical issues associated with the return of AD neuroimaging results to cognitively symptomatic individuals. Following a review of research on patient and study partner reactions to learning the results of biomarker testing for AD, we examine ethical issues that will be of increasing significance as the field transitions to an era wherein disease-modifying treatments for AD become available. We first review the ethical justification for returning AD biomarker results to individuals who desire them.

Perspective on the "African American participation in Alzheimer disease research: Effective strategies" workshop, 2018.

The Washington University School of Medicine Knight Alzheimer Disease Research Center's "African American Participation in Alzheimer Disease Research: Effective Strategies" Workshop convened to address a major limitation of the ongoing scientific progress regarding Alzheimer's disease and related dementias (ADRD): participants in most ADRD research programs overwhelmingly have been limited to non-Hispanic white persons, thus precluding knowledge as to how ADRD may be represented in non-white individuals. Factors that may contribute to successful recruitment and retention of African Americans into ADRD research were discussed and organized into actionable next steps as described within this report.

Framework for creating storytelling materials to promote African American/Black adult enrollment in research on Alzheimer's disease and related disorders.

Introduction: African American/Black adults are severely underrepresented in basic, clinical, and behavioral research studies in Alzheimer's disease and related disorders (ADRD). Innovative, evidence-based, and culturally salient strategies can maximize the recruitment of African American/Black adults into ADRD research.

Methods: We conducted and analyzed semi-structured interviews to capture the research participation stories of African American/Black participants and study partners from the University of Pittsburgh's Alzheimer's Disease Research Center.

A randomized controlled trial of amyloid positron emission tomography results disclosure in mild cognitive impairment.

Introduction: Recent studies suggest that Alzheimer's disease (AD) biomarker disclosure has no discernable psychological impact on cognitively healthy persons. Far less is known about how such results affect symptomatic individuals and their caregivers.

Methods: Randomized controlled trial of 82 mild cognitive impairment (MCI) patient and caregiver dyads (total n = 164) to determine the effect of receiving amyloid positron emission tomography results on understanding of, and perceived efficacy to cope with, MCI over 52 weeks of follow-up.

Illness Perceptions, Self-efficacy, and Self-reported Medication Adherence in Persons Aged 50 and Older With Type 2 Diabetes.

Background: Illness perceptions, patients' beliefs about their health condition, may affect medication adherence as well as self-efficacy for managing the condition in type 2 diabetes (T2DM).

Objectives: The aims of this study were to investigate the associations between illness perceptions, self-efficacy, and self-reported medication adherence among persons (≥50 years of age) with T2DM and explore whether the number of comorbid conditions moderates these associations.

Methods: This secondary analysis of cross-sectional data used baseline data from persons with T2DM.

Patients' and Family Members' Subjective Experiences of a Diagnostic Evaluation of Mild Cognitive Impairment.

Background: People with a diagnosis of mild cognitive impairment (MCI) often struggle with uncertainty and fear when learning of and coping with their diagnosis. However, little is known about their experiences and perspectives, and those of their care partners, when seeking out and undergoing a diagnostic evaluation for their cognitive symptoms.

Method: This study is a secondary analysis of a focus group discussion that was initially conducted to learn the perspectives and experiences of participants and their care partners during a mock disclosure session of brain scan results.