Determinants of Plasma Alzheimer's Disease Biomarker Use by Primary Care Providers and Dementia Specialists.

BACKGROUND: The efficiencies of plasma Alzheimer's disease (AD) biomarkers could facilitate early AD diagnosis. Unfortunately, limited knowledge exists about whether and how they would be used by clinicians. OBJECTIVE: To identify and compare determinants of plasma AD biomarker use reported by primary care providers and dementia specialists. DESIGN: Semi-structured interviews with clinicians organized using Rogers' Diffusion of Innovations theory and analyzed using an iterative coding approach. PARTICIPANTS: The subjects were internal and family medicine, neurology, and geriatrics providers with varying degrees of expertise in dementia diagnosis and care. MAIN MEASURES: Factors influencing a clinician's decision to use or not use plasma AD biomarkers in clinical practice. KEY RESULTS: We interviewed 30 clinicians (16 family or internal medicine providers, 8 geriatricians, and 6 neurologists). Fifteen were dementia specialists. Hesitance to use plasma AD biomarkers was due to perceived lack of effective treatments for AD, limited access to supports, and stigma. Plasma AD biomarkers would be more readily adopted by clinicians with dementia expertise. CONCLUSIONS: Several factors will influence clinical use of plasma AD biomarkers. Some of them may inform the design of interventions to promote the effective and appropriate clinical translation of these tests.

Artificial Intelligence and Technology Collaboratories: Innovating aging research and Alzheimer's care.

This perspective outlines the Artificial Intelligence and Technology Collaboratories (AITC) at Johns Hopkins University, University of Pennsylvania, and University of Massachusetts, highlighting their roles in developing AI-based technologies for older adult care, particularly targeting Alzheimer's disease (AD). These National Institute on Aging (NIA) centers foster collaboration among clinicians, gerontologists, ethicists, business professionals, and engineers to create AI solutions. Key activities include identifying technology needs, stakeholder engagement, training, mentoring, data integration, and navigating ethical challenges. The objective is to apply these innovations effectively in real-world scenarios, including in rural settings. In addition, the AITC focuses on developing best practices for AI application in the care of older adults, facilitating pilot studies, and addressing ethical concerns related to technology development for older adults with cognitive impairment, with the ultimate aim of improving the lives of older adults and their caregivers. HIGHLIGHTS: Addressing the complex needs of older adults with Alzheimer's disease (AD) requires a comprehensive approach, integrating medical and social support. Current gaps in training, techniques, tools, and expertise hinder uniform access across communities and health care settings. Artificial intelligence (AI) and digital technologies hold promise in transforming care for this demographic. Yet, transitioning these innovations from concept to marketable products presents significant challenges, often stalling promising advancements in the developmental phase. The Artificial Intelligence and Technology Collaboratories (AITC) program, funded by the National Institute on Aging (NIA), presents a viable model. These Collaboratories foster the development and implementation of AI methods and technologies through projects aimed at improving care for older Americans, particularly those with AD, and promote the sharing of best practices in AI and technology integration. Why Does This Matter? The National Institute on Aging (NIA) Artificial Intelligence and Technology Collaboratories (AITC) program's mission is to accelerate the adoption of artificial intelligence (AI) and new technologies for the betterment of older adults, especially those with dementia. By bridging scientific and technological expertise, fostering clinical and industry partnerships, and enhancing the sharing of best practices, this program can significantly improve the health and quality of life for older adults with Alzheimer's disease (AD).

A Roadmap for Modifying Clinician Behavior to Improve the Detection of Cognitive Impairment.

A staggering number of individuals live with cognitive decline. Primary care providers are ideally situated to detect the first signs of cognitive decline, but many persons remain undiagnosed. This limits their access to appropriate care. Unfortunately, the timely diagnosis of mild cognitive impairment or dementia in primary care is difficult to achieve. There is a great need for interventions to address this problem. This article applies an implementation science framework, the Behavioral Change Wheel, to evaluate the factors that influence detection of cognitive impairment in primary care and proposes candidate interventions for future study.

Awareness of diagnosis predicts changes in quality of life in individuals with mild cognitive impairment and mild stage dementia.

BACKGROUND AND OBJECTIVE: This observational study examined how awareness of diagnosis predicted changes in cognition and quality of life (QOL) 1 year later in older adults with normal cognition and dementia diagnoses. RESEARCH DESIGN AND METHODS: Older adults (n = 259) with normal cognition, mild cognitive impairment (MCI), or mild stage Alzheimer's disease (AD) completed measures of diagnostic awareness, cognition, and multiple domains of QOL. We compared 1-year change in cognition and QOL by diagnostic group and diagnostic awareness. RESULTS: Patients who were unaware of their diagnosis at baseline showed average decreases in both satisfaction with daily life (QOL-AD; paired mean difference (PMD) = -0.9, p < 0.05) and physical functioning (SF-12 PCS; PMD = -2.5, p < 0.05). In contrast, patients aware of their diagnosis at baseline showed no statistically discernable changes in most QOL domains (all p > 0.05). Of patients aware of their diagnosis at baseline (n = 111), those who were still aware (n = 84) showed a decrease in mental functioning at follow up (n = 27; SF-12 MCS). Change in MoCA scores in patients unaware of their diagnosis was similar to that in patients aware of their diagnosis, -1.4 points (95% CI -2.6 to -0.6) and -1.7 points (95% CI -2.4 to -1.1) respectively. DISCUSSION AND IMPLICATIONS: Awareness of one's diagnosis of MCI or AD, not the severity of cognitive impairment, may predict changes in patients' mental functioning, expectations of their memory, satisfaction with daily life, and physical functioning. The findings may help clinicians anticipate the types of threats to wellbeing that a patient might encounter and identify key domains for monitoring.

How intention to join an Alzheimer's participant recruitment registry differs by race, ethnicity, sex, and family history: Results from a national survey of US adults.

INTRODUCTION: Alzheimer's-focused participant recruitment registries are tools for accelerating enrollment into studies, however, registry members are primarily White women. METHODS: We conducted a national online survey of 1501 adults ages 50-80, oversampling for Black and Hispanic/Latino respondents, assessing intention to join a generic "brain health" registry and to join a registry that required specific tasks. RESULTS: Intention to join a registry was low (M 3.48, SD 1.77), and lower than intention to join a registry requiring specific tasks. Intention was greatest for registries requiring completing surveys (M 4.70, SD 1.77). Differences in intention were primarily between White women and Black women; differences between other groups were limited to specific tasks required. DISCUSSION: The results indicate uncertainty about what a registry is, its purpose, and/or the concept of "brain health." Using the Reasoned Action Approach (RAA) to develop evidence-based outreach messages describing a registry and required tasks may increase diversity.

Outcomes with spinal versus general anesthesia for patients with and without preoperative cognitive impairment: Secondary analysis of a randomized clinical trial.

INTRODUCTION: The effect of spinal versus general anesthesia on the risk of postoperative delirium or other outcomes for patients with or without cognitive impairment (including dementia) is unknown. METHODS: Post hoc secondary analysis of a multicenter pragmatic trial comparing spinal versus general anesthesia for adults aged 50 years or older undergoing hip fracture surgery. RESULTS: Among patients randomized to spinal versus general anesthesia, new or worsened delirium occurred in 100/295 (33.9%) versus 107/283 (37.8%; odds ratio [OR] 0.85; 95% confidence interval [CI] 0.60 to 1.19) among persons with cognitive impairment and 70/432 (16.2%) versus 71/445 (16.0%) among persons without cognitive impairment (OR 1.02; 95% CI 0.71 to 1.47, p = 0.46 for interaction). Delirium severity, in-hospital complications, and 60-day functional recovery did not differ by anesthesia type in patients with or without cognitive impairment. DISCUSSION: Anesthesia type is not associated with differences in delirium and functional outcomes among persons with or without cognitive impairment.

What is paradoxical lucidity? The answer begins with its definition.

Paradoxical lucidity in dementia is a clinically significant but understudied phenomenon. A provisional definition was proposed by the 2018 National Institute on Aging expert workshop and published in Alzheimer's and Dementia. However, several conceptual features of this definition remain vague, creating barriers to robust clinical research. Here, we critically analyze the provisional definition and present a refined definition that can be applied in clinical research. The refined definition is based on an analytic process our research group recently undertook to operationalize paradoxical lucidity for our own study protocol. Our goal is to facilitate debate and potentially harmonize interpretations of paradoxical lucidity among research groups.

Research Attitudes Questionnaire scores predict Alzheimer's disease clinical trial dropout.

BACKGROUND: Missing data are a notable problem in Alzheimer's disease clinical trials. One cause of missing data is participant dropout. The Research Attitudes Questionnaire is a 7-item instrument that measures an individual's attitudes toward biomedical research, with higher scores indicating more favorable attitudes. The objective of this study was to describe the performance of the Research Attitudes Questionnaire over time and to examine whether Research Attitudes Questionnaire scores predict study dropout and other participant behaviors that affect trial integrity. METHODS: The Research Attitudes Questionnaire was collected at baseline and weeks 26 and 52 from each member of 119 participant/study partner dyads enrolled in a Phase 2, randomized, double-blind, placebo-controlled mild-to-moderate Alzheimer's disease clinical trial. Within-subject longitudinal analyses examined change in Research Attitudes Questionnaire scores over time in each population. Logistic regression analyses that controlled for trial arm and clustering in trial sites were used to assess whether baseline Research Attitudes Questionnaire scores predicted trial completion, study medication compliance, and enrollment in optional substudies. RESULTS: Participants and study partners endorsed statistically similar ratings on the Research Attitudes Questionnaire that were stable over time. Participants with baseline Research Attitudes Questionnaire scores above 28.5 were 4.7 (95% confidence interval = 1.01 to 21.95) times as likely to complete the trial compared to those with lower scores. Applying the same cutoff, baseline study partner Research Attitudes Questionnaire scores were similarly able to predict study completion (odds ratio = 4.2, 95% confidence interval = 1.71 to 10.32). Using a score cutoff of 27.5, higher participant Research Attitudes Questionnaire scores predicted study medication compliance (odds ratio = 5.85, 95% confidence interval = 1.34 to 25.54). No relationship was observed between Research Attitudes Questionnaire score and participation in optional substudies. CONCLUSION: This brief instrument that measures research attitudes may identify participants at risk for behaviors that cause missing data.

Supported Decision Making With People at the Margins of Autonomy.

This article argues that supported decision making is ideal for people with dynamic cognitive and functional impairments that place them at the margins of autonomy. First, we argue that guardianship and similar surrogate decision-making frameworks may be inappropriate for people with dynamic impairments. Second, we provide a conceptual foundation for supported decision making for individuals with dynamic impairments, which integrates the social model of disability with relational accounts of autonomy. Third, we propose a three-step model that specifies the necessary conditions of supported decision making: identifying domains for support; identifying kinds of supports; and reaching a mutually acceptable and formal agreement. Finally, we identify a series of challenges for supported decision making, provide preliminary responses, and highlight avenues for future bioethics research.

Application of In-Home Monitoring Data to Transition Decisions in Continuing Care Retirement Communities: Usability Study.

BACKGROUND: Continuous in-home monitoring of older adults can provide rich and sensitive data capturing subtle behavioral and cognitive changes. Our previous work has identified multiple metrics that describe meaningful trends in daily activities over time. The continuous, multidomain nature of this technology may also serve to inform caregivers of the need for higher levels of care to maintain the health and safety of at-risk older adults. Accordingly, care decisions can be based on objective, systematically assessed real-time data. OBJECTIVE: This study deployed a suite of in-home monitoring technologies to detect changing levels of care needs in residents of independent living units in 7 retirement communities and to assess the efficacy of computer-based tools in informing decisions regarding care transitions. METHODS: Continuous activity data were presented via an interactive, web-based tool to the staff identified in each facility who were involved in decisions regarding transitions in care among residents. Comparisons were planned between outcomes for residents whose data were shared and those whose data were not made available to the staff. Staff use of the data dashboard was monitored throughout the study, and exit interviews with the staff were conducted to explicate staff interaction with the data platform. Residents were sent weekly self-report questionnaires to document any health- or care-related changes. RESULTS: During the study period, 30 of the 95 residents (32%) reported at least one incidence of new or increased provision of care; 6 residents made a permanent move to a higher level of care within their communities. Despite initial enthusiasm and an iterative process of refinement of measures and modes of data presentation based on staff input, actual inspection and therefore the use of resident data were well below expectation. In total, 11 of the 25 staff participants (44%) logged in to the activity dashboard throughout the study. Survey data and in-depth interviews provided insight into the mismatch between intended and actual use. CONCLUSIONS: Most continuous in-home monitoring technology acceptance models focus on perceived usefulness and ease of use and equate the intent to use technology with actual use. Our experience suggests otherwise. We found that multiple intervening variables exist between perceived usefulness, intent to use, and actual use. Ethical, institutional, and social factors are considered in their roles as determinants of use.

Expectations and experiences with physician care among patients receiving post-acute care in US skilled nursing facilities.

BACKGROUND: In the US, post-acute care in skilled nursing facilities (SNFs) is common and outcomes vary greatly across facilities. Little is known about the expectations of patients and their caregivers about physician care during the hospital to SNF transition. Our objectives were to (1) describe the experiences and expectations of patients and their caregivers with SNF physicians in SNFs, and (2) identify patterns that differed between patients with vs. without cognitive impairment. METHODS: This qualitative study used grounded theory approach to analyze data collected from semi-structured interviews at five SNFs in January-August 2018. Patients admitted for short-term SNF care 5-10 days prior were eligible to participate. Thematic analysis was performed to detect recurrent themes with a focus on modifiable aspects of physician care. Analysis was stratified by patient cognitive impairment (measured by the Montreal Cognitive Assessment at the time of the interview). RESULTS: Fifty patients and six caregivers were interviewed. Major themes were: (1) patients had poor awareness of the physician in charge of their care; (2) they were dissatisfied with the frequency of interaction with the physician; and (3) participants valued the perception of receiving individualized care from the physician. Less cognitively impaired patients were more concerned about limited interactions with the physicians and were more likely to report attempts to seek out the physician. CONCLUSION: Patient and caregiver expectations of SNF physicians were not well aligned with their experiences. SNFs aiming to improve satisfaction with care may focus efforts in this area, such as facilitating frequent communication between physicians, patients and caregivers.

Alive inside.

This article provides an ethical analysis of the U.S. practice guideline update on disorders of consciousness. Our analysis focuses on the guideline's recommendations regarding the use of investigational neuroimaging methods to assess brain-injured patients. Complex and multifaceted ethical issues have emerged because these methods alter the clinical understanding of consciousness. We address issues of false hope, patient suffering, and cost. We argue that, in spite of these concerns, there is significant benefit to using neuroimaging to assess brain-injured patients in most cases.

"Together Make a Visit; Together Make a Plan": Messaging to Adult Children with Concerns about a Parent's Memory Loss.

Using the integrative model (IM), we developed and tested messages to encourage adults to accompany their parent to a memory doctor for a cognitive evaluation. We conducted in-depth interviews (n = 60) with African American and White adults with a parent age 65+ to identify key beliefs. Next, we carried out an IM-based telephone survey with a representative sample of the target population (n = 541). Analyses revealed that attitudes varied depending on the gender of the parent. Resulting messages featuring mothers countered the fear of hearing bad news and the belief that mother does not want to be accompanied to the doctor's office. Messages featuring fathers highlighted the belief that attending a doctor's visit will provide father emotional support. We subsequently tested messages with focus group participants (n = 48) and refined them. This study advances our understanding of opportunities to communicate about memory loss, including Alzheimer's disease and dementia, in ways that encourage a behavioral action that will benefit older adults and their families.

A pragmatist's guide to the assessment of decision-making capacity.

Choice, understanding, appreciation and reasoning compose the standard model of decision-making capacity. Difficulties in determining capacity can arise when patients exhibit partial impairment. We suggest that a pragmatic approach, focusing on how capacity status affects the ultimate decision to override the patient's wishes, can help evaluators resolve difficult cases.Declaration of interestNone.

Paradoxical lucidity: A potential paradigm shift for the neurobiology and treatment of severe dementias.

Unexpected cognitive lucidity and communication in patients with severe dementias, especially around the time of death, have been observed and reported anecdotally. Here, we review what is known about this phenomenon, related phenomena that provide insight into potential mechanisms, ethical implications, and methodologic considerations for systematic investigation. We conclude that paradoxical lucidity, if systematically confirmed, challenges current assumptions and highlights the possibility of network-level return of cognitive function in cases of severe dementias, which can provide insight into both underlying neurobiology and future therapeutic possibilities.

GeneMatch: A novel recruitment registry using at-home APOE genotyping to enhance referrals to Alzheimer's prevention studies.

INTRODUCTION: Recruitment for Alzheimer's disease (AD) prevention research studies is challenging because of lack of awareness among cognitively healthy adults coupled with the high screen fail rate due to participants not having a genetic risk factor or biomarker evidence of the disease. Participant recruitment registries offer one solution for efficiently and effectively identifying, characterizing, and connecting potential eligible volunteers to studies. METHODS: Individuals aged 55-75 years who live in the United States and self-report not having a diagnosis of cognitive impairment such as MCI or dementia are eligible to join GeneMatch. Participants enroll online and are provided a cheek swab kit for DNA extraction and apolipoprotein E (APOE) genotyping. Participants are not told their APOE results, although the results may be used in part to help match participants to AD prevention studies. RESULTS: As of August 2018, 75,351 participants had joined GeneMatch. Nearly 30% of participants have one APOE4 allele, and approximately 3% have two APOE4 alleles. The percentages of APOE4 heterozygotes and homozygotes are inversely associated with age (P < .001). DISCUSSION: GeneMatch, the first trial-independent research enrollment program designed to recruit and refer cognitively healthy adults to AD prevention studies based in part on APOE test results, provides a novel mechanism to accelerate prescreening and enrollment for AD prevention trials.

The Interview for Decisional Abilities (IDA): a tool to assess the decisional capacity of abused and neglected older adults.

We present the Interview for Decisional Abilities (IDA), a semi-structured tool for use by adult protective services (APS) workers as part of their comprehensive assessments of clients. The IDA was created in response to a Federal mandate to standardize the procedures and competencies of APS agencies with a view to improving client assessments and facilitating cross-jurisdictional research on adult mistreatment. The proximal aim of the IDA is to guide workers in gathering information on the ability of suspected victims of adult mistreatment to make decisions about the risks they face.

Relationships Between Cognitive Complaints and Quality of Life in Older Adults With Mild Cognitive Impairment, Mild Alzheimer Disease Dementia, and Normal Cognition.

PURPOSE: To examine in persons with varying degrees of cognitive impairment the relationship between self-reports of cognitive complaints and quality of life (QOL). METHODS: Older adults (n=259) with normal cognition, mild cognitive impairment (MCI), and mild stage Alzheimer disease (AD) dementia completed tests of cognition and self-report questionnaires about QOL and 3 kinds of cognitive complaints: cognitive difficulties, distress from cognitive difficulties, and believing you had more memory problems than most people. Bivariate, multivariable, and multivariate regression analyses assessed relationships between domains of QOL and each cognitive complaint. RESULTS: Bivariate and multivariable analyses controlling for severity of cognitive and functional impairment found that cognitive complaints were related to relatively lower quality of daily life (QOL-AD, Dementia Quality of Life Scale), greater depression (GDS), more anxiety (BAI), higher perceived stress (PSS), and lower general mental well-being (SF-12 MCS). DISCUSSION: Cognitive complaints have robust associations with QOL. These findings have implications for AD prevention trials and management of clinical populations.

Identifiable Characteristics and Potentially Malleable Beliefs Predict Stigmatizing Attributions Toward Persons With Alzheimer's Disease Dementia: Results of a Survey of the U.S. General Public.

The general public's views can influence whether people with Alzheimer's disease (AD) experience stigma. The purpose of this study was to understand what characteristics in the general public are associated with stigmatizing attributions. A random sample of adults from the general population read a vignette about a man with mild Alzheimer's disease dementia and completed a modified Family Stigma in Alzheimer's Disease Scale (FS-ADS). Multivariable ordered logistic regressions were used to examine relationships between personal characteristics and FS-ADS ratings. Older respondents expected that persons with AD would receive less support (OR = 0.82, p = .001), have social interactions limited by others (OR = 1.13, p = .04), and face institutional discrimination (OR = 1.13, p = .04). Females reported stronger feelings of pity (OR = 1.57, p = .03) and weaker reactions to negative aesthetic features (OR = 0.67, p = .05). Those who believed strongly that AD was a mental illness rated symptoms more severely (OR = 1.78, p = .007). Identifiable characteristics and beliefs in the general public are related to stigmatizing attributions toward AD. To reduce AD stigma, public health messaging campaigns can tailor information to subpopulations, recognizable by their age, gender, and beliefs.