Jennifer H Lingler

University of Pittsburgh | Pitt · Health and Community Systems

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...

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 res...

Insufficient racial and ethnic diversity is a pervasive challenge in clinical research on Alzheimer’s disease (AD). The Recruitment Innovations for Diversity Enhancement (RIDE) in AD research study is grounded in the premise that culturally informed narratives of research participation can inspire other individuals from a given culture‐sharing grou...

There are over 100 therapies being tested in clinical trials for Alzheimer’s disease (AD) today. With therapies undergoing regulatory review and a growing DRUG DEVELOPMENT pipeline, the field is entering a new era of molecular‐specific therapies. A national registry represents an opportunity to evaluate the longitudinal outcomes of patients treated...

Aging and dementia researchers continue to face challenges in recruiting and retaining participants who represent demographically diverse communities. This continued and critical lack of representation threatens the generalizability and applicability of countless study findings and severely diminishes the field’s impact on clinical outcomes. Recrui...

Amyloid PET scans allow for the visualization of amyloid plaque in the brain, which, in the context of mild cognitive impairment (MCI), signal heightened risk for progression to Alzheimer’s dementia (AD). Disclosure of such results can profoundly impact patients as well as their family care partners. The purpose of this study was to examine the rol...

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 alg...

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:...

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 sou...

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 25% to 39% of participants. Objective: We surveyed a random sample of 443 participants (Clinical Dementia Rating [CDR]≤1) at four Alzheimer Disease Resea...

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 factor...

Late‐life cardiometabolic risk factors (overweight/obesity, hypertension, hypercholesterolemia, and diabetes) have been inconsistently reported to associate with dementia, with both increased and decreased risks. The purpose of this study was to examine such associations with incident dementia using the large national dataset from National Alzheime...

Background: Rural, ethnically diverse older adults face a heightened risk of Alzheimer's disease and related dementias (ADRD), but experience disparities in dementia education, detection, and treatment. The Covid-19 pandemic struck during a rural, faith-based outreach to address this gap. In-person research activities were redesigned to employ a t...

Background and Objectives This secondary analysis examined 1) the association between illness perceptions (perceived understanding and cause of mild cognitive impairment [MCI]) and self-management behaviors for cognitive health, and 2) whether sociodemographic and clinical factors moderate such relationships among persons with MCI. Research Design...

We examined the association between APOE ɛ2/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 (adjuste...

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 an...

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 caregi...

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...

Objectives: To examine the associations of APOE ε2ε4 with the development of Alzheimer's disease (AD) and mild cognitive impairment (MCI) in non-Latino whites. Design: Prospective longitudinal cohort study. Setting: Uniform Data Set from the National Alzheimer's Coordinating Center (NACC) between 2005 and August 2018 (data freeze in September...

New advances in digital technologies and data-collection methods support expansion of the traditional research model in the current Digital Age. As researchers continue to explore ways to collect, manage, and share individual-level research study data, investigators must also acknowledge new ethical considerations that arise. To ensure protection o...

As calls for transparency in human subjects research grow, investigators conducting Alzheimer's disease (AD) biomarker research are increasingly required to consider their ethical obligations regarding the return of AD biomarker test results to research participants. When disclosing these test results to potentially vulnerable participants, investi...

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 Unite...

https://deepblue.lib.umich.edu/bitstream/2027.42/152786/1/alzjjalz201908111.pdf

Older adults with memory loss often require assistance from caregivers to manage their medications. This study examined the efficacy of a problem-solving-based intervention focused on caregiver medication management, problem solving, self-efficacy, and daily hassles. Caregiver health-related quality of life (HRQoL) and patient health care utilizati...

The increasing use of biomarker tests for Alzheimer's disease (AD) in research and, to a much lesser extent, specialty care settings has led to questions concerning how individuals may react to learning of their AD biomarker status in the absence of a cure or preventative treatment. The purpose of this chapter is to systematically review the publis...

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....

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 usi...

Misdiagnosis, lack of specialists, and patient dismissal of symptoms can contribute to delayed detection of early cognitive impairment. Understanding patient perspectives during and around time of cognitive diagnosis is crucial, as reactions to diagnosis can impact disease management and overall health. The current study conducted semi-structured i...

Introduction Given mounting calls to disclose biomarker test results to research participants, we explored factors underlying decisions by patients with mild cognitive impairment to receive amyloid imaging results. Methods Prospective, qualitative interviews were conducted with 59 participants (30 = mild cognitive impairment patients, 29 = care pa...

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% care...

Self-care agency (SCA), defined as one's ability and willingness to engage in self-care behaviors, can influence actual performance of self-care behaviors in lung transplant recipients (LTRs). Understanding patterns of SCA over time may inform the design of interventions to promote self-care in LTRs. Using group-based trajectory modeling, we sought...

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...

Background Mild cognitive impairment (MCI) has an uncertain etiology and prognosis and may be challenging for clinicians to discuss with patients and families. Amyloid imaging may aid specialists in determining MCI etiology and prognosis, but creates novel challenges related to disease labeling. Methods We convened a workgroup to formulate recomme...

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 Leventh...

Limited access to resources and delayed detection of subtle cognitive changes may negatively impact the long-term cognitive health of rural-dwelling adults. This study explored perceived social determinants of health among older, rural-dwelling adults with early-stage cognitive impairment. Semi-structured interviews were conducted with older, rural...

Methods: This is a qualitative study that used expert review, tabletop discussion, and a survey of health care professionals to develop and evaluate an evacuation protocol. The protocol was revised after each stage of review in order to reach a consensus document. Results: The project concluded with the finalization of a protocol which addresses...

This study reports on the first systematic review focused on lung transplant recipients (LTRs) and provides evidence regarding 1) prevalence of nonadherence to the post-transplant medical regimen; 2) risk factors for nonadherence; 3) impact of adherence-promoting interventions; and 4) transplant-related clinical outcomes of nonadherence in LTRs. Fo...

The translation of successful behavior change interventions to new delivery mechanisms requires an understanding of the underlying concepts that led to its success. This has particular relevance when converting in-person interventions into remote technological applications. The active ingredients that may have been successful in the "live" applicat...

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 k...

Purpose: Mild cognitive impairment (MCI) is a well-recognized risk state for Alzheimer's disease and other dementias. MCI is rapidly increasing among older adults in general and has not yet been examined in older adults within the Appalachian region. Our objective was to compare MCI symptom severity among older rural and urban Appalachian adults w...

The increased use of PET amyloid imaging in clinical research has sparked numerous concerns about whether and how to return such research test results to study participants. Chief among these is the question of how best to disclose amyloid imaging research results to individuals who have cognitive symptoms that could impede comprehension of the inf...

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 deficie...

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 exte...

Caring for an older adult with memory loss is stressful. Caregiver stress could produce negative outcomes such as depression. Previous research is limited in examining multiple intermediate pathways from caregiver stress to depressive symptoms. This study addresses this limitation by examining the role of self-efficacy, social support, and problem...

Health care providers typically rely on family caregivers (CG) of persons with dementia (PWD) to describe difficult behaviors manifested by their underlying disease. Although invaluable, such reports may be selective or biased during brief medical encounters. Our team explored the usability of a wearable camera system with 9 caregiving dyads (CGs:...

To characterize illness perceptions among persons with mild cognitive impairment (PWMCI) and their family care partners, and to examine whether PWMCI's and their family care partners' illness perceptions were associated with their own, as well as the other member of the dyad's, emotional reactions to MCI. This cross-sectional study of PWMCI and the...

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,...

With the growing population of individuals affected by Alzheimer's disease (AD) and related disorders, there is a pressing demand for research on late-life cognitive disorders. However, this population's high risk for decisional incapacity necessitates evaluation of capacity to consent to research participation, adding cost and complexity to the re...

To explore the literature to examine the physical, social, psychological, financial, usability, and feasibility outcomes of web-based interventions on caregivers of people with cancer and to identify potential trends in this body of evidence. . PubMed, CINAHL®, PsycINFO®, and Inspec. . Six articles met inclusion criteria. Across studies, most car...

Effective conceptualizations of research burden should address indirect burdens related to research duration, intensity, and invasiveness. Introducing the concept of perceived research burden, we developed, tested, and validated a new instrument, the Perceived Research Burden Assessment (PeRBA). Initial psychometric evaluation of PeRBA reveals good...

Objective: To describe the subjective experiences of older adults with early-stage Alzheimer's disease or related cognitive disorders (ADRDs) and their family caregivers who participated in an art museum engagement activity. Methods: Four focus groups were conducted with 10 persons with ADRD and 10 family caregivers following the completion of a...

This study examined the attribution of mild cognitive impairment (MCI) etiology assigned by individuals with MCI and their care partners, and the extent to which the dyads agreed on the attribution of MCI etiology. We conducted secondary analyses of cross-sectional data from a cohort of individuals with MCI (n = 60) and their care partners (n = 60)...

The current exploratory investigation aims to establish the reliability and validity of a hope measure, the Herth Hope Index, among families impacted by early cognitive impairment (N = 96). Exploratory factor analysis was used to examine the dimensionality of the measure. Bivariate analyses were used to examine construct validity. The sample had mo...

Purpose: The purpose of this study was to describe humor and laughter in persons with cognitive impairment (PWCI) and caregivers who were recalling a shared experience in a focus group. Design: Twenty participants attended an Art Engagement Activity at the Andy Warhol Art Museum, which included a guided tour and an art project. All PWCI had medical...

Increasingly, family members are assisting with the complex task of medication management when patients are experiencing cognitive decline. To date, limited published research addresses caregiver-mediated medication management of patients with impaired cognition. Thus, the purpose of this study was to describe the characteristics and correlates of...

Amyloid imaging is becoming an increasingly popular tool in clinical research on Alzheimer's disease. In early studies, questions of whether to disclose amyloid imaging results were largely mooted by the immature state of the science. Lack of clarity as to what constituted a positive scan and what a positive scan meant from a prognostic or diagnost...

Family caregivers generally underestimate the health and well-being of Alzheimer disease (AD) patients when compared to patients' self-assessments. The goals of this study were to identify caregiver, patient, and contextual factors associated with caregiver rating bias. One hundred five patients with AD, along with their family caregivers, were ass...

Purpose: To describe persons with Alzheimer's (AD) and their caregivers' subjective views and experiences regarding participation in an art engagement activity. Methods: Four focus groups were conducted with participants in a novel art engagement activity at the Andy Warhol Museum. Immediately following the completion of the activity, we recruited...

Anticipatory grief is the process of experiencing normal phases of bereavement in advance of the loss of a significant person. To date, anticipatory grief has been examined in family caregivers to individuals who have had Alzheimer disease (AD) an average of 3 to 6 years. Whether such grief is manifested early in the disease trajectory (at diagnosi...

The purpose of this study was to characterize the health-related activities that individuals self-initiate after being diagnosed with mild cognitive impairment (MCI). Fifty-three people with MCI were queried regarding health-related activity changes made as a direct result of the MCI diagnosis, excluding activities that they were performing prior t...

Persons with mild cognitive impairment (MCI) and Alzheimer disease (AD) are at heightened risk for future decisional incapacity. We sought to characterize advance care planning (ACP) rates over time in individuals who had no advance directives (living will or durable power of attorney) in place when they initially presented for a cognitive evaluati...

This study examines how underrepresented older urban and rural-dwelling individuals conceptualize participation in cognitive impairment studies. Nine focus groups were held with urban and rural-dwelling older adults who had participated in a community-based memory screening study. Expected and experienced benefits of research participation were mot...

This article presents an interpretive case analysis of an older adult's experience with treatment decision making for acute myeloid leukemia. Interview and observational data were compared and contrasted with key constructs in behavioral decision theory to analyze theoretical utility and fit. Decision making involved a complex interplay among the p...