"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. METHODS: Qualitative description was performed to analyze (n = 34) transcripts of audio-recorded amyloid PET results disclosure sessions involving MCI care dyads. The analysis focused on characterizing the frequency and nature of questions raised during an open question-and-answer (Q&A) period following the return of scan results using a standardized protocol. RESULTS: Nearly all (n = 32/34) dyads posed questions during Q&A. Questions fell within six main categories with the most common being requests for clarification regarding AD/MCI, and next steps given the result. Questions were interspersed with comments reflecting the need for emotional support. Independently administered assessments of comprehension of results showed that, following the disclosure and Q&A, 31/32 participants with MCI and 31/31 care partners scored ≥4 on a 5-point scale. The number of questions asked by care partners during Q&A positively correlated with their level of comprehension (n = 31, Spearman's r = 0.370, p = 0.040). DISCUSSION: This analysis highlights the value of providing opportunities for patients and their family members to ask questions upon learning patients' brain amyloid status. Disclosing clinicians should be prepared to provide clarification, resources, and support to patients and families during the return of amyloid PET results.

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. The pandemic was associated with a 77% drop in enrollment, with projected trend recovery in March 2024 and 100% recovery in September 2024. COVID was associated with a 91% drop in Black/African American participants, compared to 71% in White participants. Enrollment of both Hispanic and female participants was declining 1.4% and 0.3%/month pre-pandemic. DISCUSSION: Funders and researchers should account for ongoing COVID-19 impact on ADRD research enrollment. Strategies to speed enrollment recovery are needed, especially for Black/African American and Hispanic groups. HIGHLIGHTS: Tested COVID pandemic association with enrollment at Alzheimer's Disease Research Centers. During versus pre-pandemic enrollees differed on demographic and clinical variables. Interrupted time series analyses: immediate 77% drop in enrollment related to COVID. Recovery projections: trend recovery in March 2024, 100% recovery in September 2024. Enrollment of African American and Hispanic participants should be prioritized.

Dignity in people with dementia: A concept analysis.

Background: 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. Considering the increased disease prevalence and the continuously escalating costs of dementia care, establishing a productive value-based guideline may prevent suffering, maximize dignity, and thus promote quality of life (QoL).Aim: The goal of this project is to identify actionable targets for integrating dignity harmoniously and practically into care planning and management for PwD.Research Design: We conducted a concept analysis using Walker and Avant's eight-step process. A comprehensive literature search was conducted (PubMed and CINAHL) with the keywords "dignity," "dementia," "Alzheimer's disease," and "dementia care."Results: A total of 42 out of 4910 publications were included. The concept of dignity in PwD is operationalized as the promotion of worthiness and the accordance of respect that allows the presence and expression of a person's sense of self, regardless of physical, mental, or cognitive health. The concept has two subdimensions: absolute dignity which encompasses the inherent self and relative dignity characterized by its dynamic reflective nature. Worthiness and respect are the two main attributes, while autonomy is an underlying component of dignity. Specific antecedents of dignity in PwD are empowerment, non-maleficence, and adaptive environmental scaffolding. As a consequence of facilitating dignity in PwD, QoL may be enhanced.Conclusion: As a foundational and necessary humanistic value, incorporating dignity into dementia care can lead to efficient and effective care that optimizes QoL in PwD throughout their disease progression.

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. We used Rasch analysis to examine PeRBA's psychometric properties, and data-model fit both at item and scale levels. RESULTS: PeRBA demonstrated good reliability and item and person fit for participants and family members. A few items did not fit the model for participants or family members. Areas of content redundancy were found in items assessing similar amounts of perceived research burden. Areas of content gaps were also found, with no items assessing certain levels of perceived research burden. CONCLUSION: Analysis results support the good overall psychometric properties of PeRBA among research participants in studies of AD and their family members. Recommendations have been provided to improve the assessment, including rewording items and adding items that could account for a broader range of perceived research burden.

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. Dyads posed questions regarding: basic neuroanatomy; the spectrum of normal cognitive aging to dementia; clinical phenotypes and pathological hallmarks of ADRD; secondary prevention of ADRD; and advance planning. In response, PTC facilitators provided disease-specific education, clarification of overt misconceptions, caregiver support, and emotion de-escalation. CONCLUSION: Nurses conducting PTC for AD biomarker testing should be equipped to answer questions about topics both directly and indirectly related to testing, and also provide emotional support.

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. DESIGN: Multicenter mixed methods. SETTING: In-person or phone. PARTICIPANTS: A total of 443 participants at 4 NIA-funded Alzheimer Disease Research Centers (ADRCs) were randomly selected and invited to participate if they were 45 years of age or more, enrolled in longitudinal studies, and had a Clinical Dementia Rating Scale global score ≤1. MEASUREMENTS: Participants completed a 20-minute survey including the 21-item PeRBA about their research participation. RESULTS: PeRBA demonstrated high-internal consistency and convergent validity. PeRBA scores correlated with expected perceptual factors. Higher PeRBA scores were associated with lower attendance and higher dropout rates. CONCLUSIONS: PeRBA can be used by researchers to identify participants who may feel overburdened and tailor approaches and strategies to support participants in longitudinal AD studies, maximizing participation, and reducing dropout. Making efforts to increase participants' understanding of study procedures, and building and maintaining trust throughout the study, can contribute to reducing perceived burden and potentially increasing retention in longitudinal AD studies.

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. Self-administered questionnaires, including the Brief Illness Perception Questionnaire, Self-efficacy for Managing Chronic Disease, and the 4-item Morisky-Green-Levine Medication Adherence Scale, were used. We performed hierarchical multiple linear regression analyses. RESULTS: Participants (N = 146) were 57.5% female, 67.1% white, and on average 64 years old. Six dimensions of illness perceptions (ie, consequences, personal control, treatment control, identity, concerns, and emotional representations) were associated with self-efficacy for managing T2DM. Five dimensions (ie, timeline, personal control, treatment control, coherence, and emotional representations) were significant predictors of self-reported medication adherence. Whereas the number of comorbid conditions was significantly associated with self-efficacy for managing T2DM in all models (P values < .001), the number of comorbid conditions was not associated with self-reported medication adherence. CONCLUSIONS: This study suggests that illness perceptions and comorbid conditions may play a critical role in either self-efficacy or self-reported medication adherence in persons (≥50 years of age) with T2DM. Future research should incorporate an individual's illness perceptions and comorbid conditions into the development of interventions that may improve both self-efficacy and medication adherence in T2DM.

Attitudes toward advance care planning among persons with dementia and their caregivers.

OBJECTIVES: To examine factors that influence decision-making, preferences, and plans related to advance care planning (ACP) and end-of-life care among persons with dementia and their caregivers, and examine how these may differ by race. DESIGN: Cross-sectional survey. SETTING: 13 geographically dispersed Alzheimer's Disease Centers across the United States. PARTICIPANTS: 431 racially diverse caregivers of persons with dementia. MEASUREMENTS: Survey on "Care Planning for Individuals with Dementia." RESULTS: The respondents were knowledgeable about dementia and hospice care, indicated the person with dementia would want comfort care at the end stage of illness, and reported high levels of both legal ACP (e.g., living will; 87%) and informal ACP discussions (79%) for the person with dementia. However, notable racial differences were present. Relative to white persons with dementia, African American persons with dementia were reported to have a lower preference for comfort care (81% vs. 58%) and lower rates of completion of legal ACP (89% vs. 73%). Racial differences in ACP and care preferences were also reflected in geographic differences. Additionally, African American study partners had a lower level of knowledge about dementia and reported a greater influence of religious/spiritual beliefs on the desired types of medical treatments. Notably, all respondents indicated that more information about the stages of dementia and end-of-life health care options would be helpful. CONCLUSIONS: Educational programs may be useful in reducing racial differences in attitudes towards ACP. These programs could focus on the clinical course of dementia and issues related to end-of-life care, including the importance of ACP.

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. RESULTS: Gains in the primary outcomes were not consistently observed. Amyloid negative patients reported greater perceived ambiguity regarding MCI at follow-up, while moderate and sustained emotional distress was observed in patients, and to a lesser extent, caregivers, of those who were amyloid positive. There was no corresponding increase in depressive symptoms. DISCUSSION: These findings point to the possibility that both MCI patients and caregivers may need emotional support after the disclosure of amyloid scan results.

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.

Geriatric Mental Healthcare Training: A Mini-Fellowship Approach to Interprofessional Assessment and Management of Geriatric Mental Health Issues.

INTRODUCTION: The population in United States aged 65 and older has rapidly grown and is projected to grow faster than any other segment of the population. Despite this demographic shift, the nation's geriatric workforce is shrinking. AIM: The primary goal of the fellowship was to form a learning collaborative that would help trainees in medicine, nursing, social work, pharmacy and occupational/physical therapy understand the roles of each discipline involved in the provision of geriatric mental healthcare and to enhance basic knowledge of common geriatric syndromes. METHODS: Faculty from the University of Pittsburgh developed a format for the mini-fellowship. Trainees from five disciplines were recruited for participation in the mini-fellowship. This was offered annually over four-year period, hosted by the John A. Hartford Foundation Centers of Excellence in Geriatric Psychiatry at the University of Pittsburgh and University of California at San Diego. RESULTS: Eighty-one participants across five schools of the health sciences completed the mini-fellowship. Feedback was positive: most participants appreciated learning from other team members, endorsed appreciation of the contributions of other disciplines to patient care, and reported improved understanding of three major geriatric syndromes. CONCLUSION: Conducting an interdisciplinary mini-fellowship in geriatric mental health was feasible and well received by trainees. The fellowship enabled better appreciation for the provision of geriatric mental health care within the context of an interprofessional team. However, decanal and faculty leadership across the schools needs to place greater emphasis on the importance of interprofessional team-based learning and to free up time for such activity.

Evaluating the Usability and Acceptability of Communication Tools Among Older Adults.

Acutely ill patients may have trouble communicating their symptoms and needs verbally. The current study evaluated the usability and acceptability of six commercially available communication tools with older adults in a non-clinical, controlled setting. Participants evaluated various communication boards and communication applications (apps) by using the tools to communicate needs and symptoms in various scenarios. Participants completed a modified technology acceptance questionnaire and selected the tool they perceived as most useful and easy to use. Bivariate analysis was used to compare communication boards and apps. Performance on most tasks was significantly better using communication boards compared to communication apps. However, participants reported that given more time and training, the apps could be used effectively. A feasibility study is needed to determine whether acutely ill older adults can use these communication tools to successfully convey their symptoms and needs in a hospital setting [Journal of Gerontological Nursing, 44(9), 30-39.].

Health literacy and its correlates in informal caregivers of adults with memory loss.

This secondary analysis examined health literacy among informal caregivers of community-dwelling older adults with memory loss and assessed correlates of caregiver health literacy using the Abilities, Skills and Knowledge Model. Caregiver health literacy (n = 91) was assessed by the Newest Vital Sign. Limited health literacy presented in 38.5% caregivers, with significantly low document literacy. Health literacy was associated bivariately with age, education, global cognitive function, executive function, and working memory (all ps < 0.001), as well as medication knowledge (p = 0.015). Hierarchical regression analyses revealed that older age (p = 0.017), and lower global cognitive function (p < 0.001), working memory (p = 0.001), and academic skills (years of education) (p = 0.004), independently predicted lower health literacy (R2 = 0.54). Medication knowledge, however, was not found to be an independent predictor in the model. Findings suggest limited health literacy is a potential issue among informal caregivers of adults with memory loss. Appropriate assessment and personalized support are needed for informal caregivers who are at high risk for poor health literacy.

Patterns and correlates of adherence to self-monitoring in lung transplant recipients during the first 12 months after discharge from transplant.

Self-monitoring of lung function, vital signs, and symptoms is crucial for lung transplant recipients (LTRs) to ensure early detection of complications and prompt intervention. This study sought to identify patterns and correlates of adherence to self-monitoring among LTRs over the first 12 months post-discharge from transplant. This study analyzed existing data from the usual care arm participants of a randomized clinical trial who tracked self-monitoring activities using paper-and-pencil logs. Adherence was calculated as the percent of days LTRs recorded any self-monitoring data per interval: hospital discharge-2 months, 3-6 months, and 7-12 months. The sample (N=91) was mostly white (87.9%), male (61.5%), with a mean age of 57.2±13.8 years. Group-based trajectory analyses revealed two groups: (i) moderately adherent with slow decline (n=29, 31.9%) and (ii) persistently nonadherent (n=62, 68.1%). Multivariate binary logistic regression revealed the following baseline factors increased the risk in the persistently nonadherent group: female (P=.035), higher anxiety (P=.008), and weaker sense of personal control over health (P=.005). Poorer physical health over 12 months were associated with increased risk in the persistently nonadherent group (P=.004). This study highlighted several modifiable factors for future interventions to target, including reducing post-transplant anxiety, and strengthening sense of personal control over health in LTRs.

Willingness to Be a Brain Donor: A Survey of Research Volunteers From 4 Racial/Ethnic Groups.

INTRODUCTION: Racial and ethnic groups are under-represented among research subjects who assent to brain donation in Alzheimer disease research studies. There has been little research on this important topic. Although there are some studies that have investigated the barriers to brain donation among African American study volunteers, there is no known research on the factors that influence whether or not Asians or Latinos are willing to donate their brains for research. METHODS: African American, Caucasian, Asian, and Latino research volunteers were surveyed at 15 Alzheimer Disease Centers to identify predictors of willingness to assent to brain donation. RESULTS: Positive predictors included older age, Latino ethnicity, understanding of how the brain is used by researchers, and understanding of what participants need to do to ensure that their brain will be donated. Negative predictors included African/African American race, belief that the body should remain whole at burial, and concern that researchers might not be respectful of the body during autopsy. DISCUSSION: The predictive factors identified in this study may be useful for researchers seeking to increase participation of diverse ethnic groups in brain donation.

Characteristics and Correlates of Caregivers' Perceptions of Their Family Members' Memory Loss.

BACKGROUND: Understanding caregiver's perceptions of their family member's memory loss is a necessary step in planning nursing interventions to detect and address caregiver burden. OBJECTIVE: The purpose of this study was to characterize caregivers' perceptions of their family members' memory loss and identify potential correlates within Leventhal's common sense model (CSM). METHODS: This secondary analysis used baseline data from a larger randomized controlled trial. Patients with memory loss and their caregivers (N = 83 dyads) from the community were included. The adapted Brief Illness Perception Questionnaire (BIPQ) assessed caregivers' illness perceptions. Eight additional instruments measured correlates within the CSM. Responses were described; multiple linear regression was used to predict BIPQ dimension scores, and logistic regression was used to predict dichotomized BIPQ scores. RESULTS: Most caregivers were female, White, and spouses of the patients; they reported a range of perceptions on the nine BIPQ dimensions. Patients' cognitive function consistently emerged as a significant correlate of caregivers' illness perceptions, explaining the most variance in caregivers' perceived consequences, identity, and treatment control (p < .01). Caregivers' reactions to patients' behavioral symptoms and caregivers' trait anxiety were associated with perceived illness coherence (p < .01). Caregivers with higher severity of daily hassles and White caregivers perceived that their family members' memory loss would last longer (p < .001). DISCUSSION: Caregivers' perceptions of family members' memory loss varied; distinct dimensions of caregivers' illness perception were associated with a range of clinical and psychosocial factors. This exploratory study demonstrates the complexity of applying the CSM to caregivers of persons with memory loss.

Wearable Technology to Garner the Perspective of Dementia Family Caregivers.

Family caregivers of individuals with dementia typically have limited opportunity during brief clinical encounters to describe the dementia-related behaviors and interactions they find difficult to handle. Lack of objective data depicting the nature, intensity, and impact of these manifestations of the underlying disease further constrains the extent to which strategies recommended by nurses or other health care providers can be tailored to the situation. The current article describes a prototype wearable camera system used to gather image and voice data from the caregiver's perspective in a pilot feasibility intervention study conducted with 18 caregiving dyads. Several scenarios are presented that include salient events (i.e., behaviors or interactions deemed difficult by the caregiver or identified as concerning by the research team during screening) captured in the resulting video. The current authors anticipate future wearable camera systems and software will automate screening for salient events, providing new tools for assessment and intervention by nurses.

An intervention to maximize medication management by caregivers of persons with memory loss: Intervention overview and two-month outcomes.

Overseeing medication-taking is a critical aspect of dementia caregiving. This trial examined a tailored, problem-solving intervention designed to maximize medication management practices among caregivers of persons with memory loss. Eighty-three community-dwelling dyads (patient + informal caregiver) with a baseline average of 3 medication deficiencies participated. Home- and telephone-based sessions were delivered by nurse or social worker interventionists and addressed basics of managing medications, plus tailored problem solving for specific challenges. The outcome of medication management practices was assessed using the Medication Management Instrument for Deficiencies in the Elderly (MedMaIDE) and an investigator-developed Medication Deficiency Checklist (MDC). Linear mixed modeling showed both the intervention and usual care groups had fewer medication management problems as measured by the MedMaIDE (F = 6.91, p < .01) and MDC (F = 9.72, p < .01) at 2 months post-intervention. Reduced medication deficiencies in both groups suggests that when nurses or social workers merely raise awareness of the importance of medication adherence, there may be benefit.

A Qualitative Study on the Types and Purposes of Social Activities in Late Life.

This qualitative study examines older adults' subjective views on the types and purposes of social activities. In-depth interviews were conducted with a purposive sample of 20 older adults, with low (n = 10) and high (n = 10) memory performance. We used grounded theory methods to analyze the narrative data. Four types of social activities-Altruism, Creativity, Game, and Motion-were identified. The purpose of social activities included enjoyment, relaxation, stimulation, and belongingness. Those in the low memory group seemed to face more barriers to participation. Different types of social activities may be important for cognitive health and well-being.