Kristin Harkins

• Master of Public Health
• University of Pennsylvania

Background Early diagnosis is crucial to the optimal management of patients with cognitive impairment due to Alzheimer’s disease (AD) or AD-related dementias. For some patients, early detection of cognitive impairment enables access to disease-modifying therapies. For all patients, it allows access to psychosocial supports. Patients typically first...

Research on caregivers suggests interpersonal contact with persons with Alzheimer’s disease (AD) and higher disease-oriented knowledge may heighten AD stigma, though these same mechanisms are often employed in antistigma campaigns. If we better understand associations among caregiver experience, interpersonal contact, AD knowledge, and AD stigma, w...

Background Best practice recommendations suggest a person close to a patient with mild cognitive impairment (MCI) or dementia be involved in their care. This person is often referred to as a “caregiver,” though the term “care partner” has increasingly been used in research and care instead of “caregiver.” Unlike “caregiver,” “care partner” suggests...

Background People living with Alzheimer’s disease and related dementias confront numerous decisions that affect their wellbeing, as well as that of their family members. Research demonstrates the importance of family involvement in such decision making, yet there is a lack of knowledge about how patients and families work together to make decisions...

Background With the advent of FDA approved anti‐amyloid therapy and recognition of increased side effects in APOE e4 carriers, APOE testing is now recommended for patients considering anti‐amyloid therapies such as lecanemab. Given the therapeutic implications and anticipated volume of eligible patients, the traditional model of in‐person, pre‐ and...

Background Availability of amyloid modifying therapies will dramatically increase the need for disclosure of Alzheimer’s disease (AD) related genetic and/or biomarker test results. The 21st Century Cares Act requires the immediate return of most medical test results, including AD biomarkers. A shortage of genetic counselors and dementia specialists...

Background The impact of knowledge of β‐amyloid status on cognitively unimpaired persons' cognitive test performance is unknown. Method Cognitively unimpaired adults aged 65‐80 with a first‐degree relative with AD received a dementia risk estimate and were randomly assigned to disclosure (D+) or non‐disclosure (D‐) of their β‐amyloid PET scan resu...

We sought to understand how persons living with dementia (PWD) and their family care partners value hypothetical treatment outcomes relative to one other using a point allocation task. Participants distributed 100 points across six potential outcomes based on perceived relative importance. Outcomes included slowed decline in brain function, reduced...

Alzheimer’s disease (AD)-focused recruitment research registries can help identify eligible participants for AD studies, but registry participation is limited among racial and ethnic groups most at risk for AD. Using the Reasoned Action Approach (RAA), this study is part of a larger project to design theory-based persuasive recruitment messages tha...

Background Promoting options for aging in place (AIP) has broad appeal to policymakers and professionals providing services to persons living with dementia (PWD). However, the benefits or burdens of AIP likely vary among individuals and families. We sought to describe factors influencing decision‐making to age in place versus seek a higher level of...

Objective: We urgently need to understand Alzheimer's disease (AD) stigma among Black adults. Black communities bear a disproportionate burden of AD, and recent advances in early diagnosis using AD biomarkers may affect stigma associated with AD. The goal of our study is to characterize AD stigma within our cohort of self-identified Black particip...

INTRODUCTION Physical activity is associated with reduced risk of cognitive and functional decline but scalable, sustainable interventions for populations at risk for Alzheimer's disease (AD) and AD and related dementias (ADRD) are lacking. METHODS A 12‐week randomized‐controlled trial was conducted with a 3‐week follow‐up using a national AD prev...

Objectives Early diagnosis of Alzheimer’s disease (AD) using brain scans and other biomarker tests will be essential to increasing the benefits of emerging disease-modifying therapies, but AD biomarkers may have unintended negative consequences on stigma. We examined how a brain scan result affects AD diagnosis confidence and AD stigma. Methods Th...

Prior studies of Alzheimer’s disease (AD) biomarker disclosure have answered important questions about individuals’ safety after learning and comprehending their amyloid PET results; however, these studies have typically employed highly structured disclosure protocols and focused on the psychological impact of disclosure (e.g., anxiety, depression,...

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. To identify and compare determinants of plasma AD biomarker use reported by primary care providers and dementia specialists. Semi-structured interviews wi...

Background “Aging in place” (AIP), the ability to remain in one’s home with age, has broad appeal to policy makers and professionals providing services to adults with serious illness. AIP is viewed as both an intervention for people with dementia (PWD) and as a desirable outcome. However, it’s not clear that AIP is always associated with sustained...

Background Composite measures of survival and residence, such as institution‐free days (IFDs), encompass many patient and family priorities and are readily measured using payer claims or electronic health record data. However, knowledge gaps limit their application to studies of people with dementia (PWD). First, PWD, family care partners, and clin...

Background and Objectives Paradoxical lucidity is defined as an instance of unexpected lucid behavior in a person who is assumed to be noncommunicative due to a progressive and pathophysiologic dementing process. To inform studies of the prevalence, characteristics, and impact of these behaviors, this interview study examined caregivers’ experience...

Objective We examined how cognitive complaint types (CCTs) correlate with cognitive testing, perceived stress, and symptom distress in older adults with normal cognition and dementia. Methods Older adults (n = 259) with normal cognition, mild cognitive impairment, or mild-stage Alzheimer disease completed cognitive testing and self-report measures...

The COVID-19 pandemic has been devastating for people living with dementia (PLWD) and their caregivers. While prior research has documented these effects, it has not delved into their specific causes or how they are modified by contextual variation in caregiving circumstances.

INTRODUCTION How do reactions to a brain scan result differ between Black and White adults? The answer may inform efforts to reduce disparities in Alzheimer's disease (AD) diagnosis and treatment. METHODS Self‐identified Black (n = 1055) and White (n = 1451) adults were randomized to a vignette of a fictional patient at a memory center who was tol...

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 Alzhei...

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 "brai...

Background: Gender and biological sex are social and structural determinants of health and umbrella concepts encompassing many distinct attributes. This systematic review summarizes measures of gender and biological sex published in the biomedical literature. The goal was to identify measures that may be useful to researchers studying Alzheimer's...

Objective: Studies of Alzheimer's disease (AD) typically include "study partners" (SPs) who report on participants' cognition and function. Prior studies show SP reports differ depending on the relationship between the SP and participant, that is, spouse or adult child. Adult children SPs are typically female. Could differing reports be due to gen...

Three pathological processes define or are characteristic of Alzheimer's disease (AD): amyloid-β, hyperphosphorylated tau, and neurodegeneration. Our understanding of AD is undergoing a transformation due to our ability to measure biomarkers of these processes across different stages of cognitive impairment. There is growing interest in using AD bi...

Older adults who are members of sexual and gender minoritized (SGM) communities, including lesbian, gay, bisexual, transgender, queer, intersex, asexual and other identity (LGBTQIA+) groups, are at high risk of cognitive problems and caregiving deficits. Sexual orientation is a social and structural determinant of health (SSDOH), impacting cognitiv...

Recent arguments in aging and dementia research suggest that “terminal lucidity”—defined as unexpected communication or connectedness occurring shortly before death—is distinct from “paradoxical lucidity”—defined as an episode of communication or connectedness in a person who is assumed to have lost these capacities due to progressive neurodegenera...

Background There is a lack of racial, ethnic, and sex diversity in recruitment research registries and Alzheimer’s disease (AD) research studies and trials. Theory-based recruitment messages may provide an opportunity to increase study participant diversity in AD research studies and trials. Objective To identify behavioral, normative, and control...

Background: Alzheimer’s disease and Alzheimer’s disease related dementias (AD/ADRD) research typically requires participants to enroll with a “study partner” (SP). Little is known about what predicts who steps into the SP role or whether the SP’s relationship to the participant affects their reports of disease severity.Methods: Health and Retiremen...

Background Participants in Alzheimer’s disease (AD) prevention studies are generally required to enroll with a study partner; this requirement constitutes a barrier to enrollment for some otherwise interested individuals. Analysis of dyads enrolled in actual AD trials suggests that the study partner requirement shapes the population under study. O...

Alzheimer’s disease (AD) causes progressive disability and, ultimately, death. Currently no therapy can delay or slow cognitive and functional decline. This prognosis contributes to the general public’s negative reactions—discrimination, pity, and social distance—toward individuals with AD and their families. But what if, using AD biomarker tests,...

Objective Differences between men and women are common in published research on aging and Alzheimer’s disease and Alzheimer’s disease and related dementias (AD/ADRD). What do these differences mean? To answer this, rigorous measurement is needed. We investigated current methods for measuring sex/gender in aging and AD/ADRD cohort studies. Method A...

Objective The symptoms and prognosis of Alzheimer's disease (AD) dementia contribute to the public's negative reactions toward individuals with AD dementia and their families. But what if, using AD biomarker tests, diagnosis was made before the onset of dementia, and a disease-modifying treatment was available? This study tests the hypotheses that...

Background Research registries have been developed as a strategy to accelerate enrollment into Alzheimer’s disease studies. However, there remains a need to increase both total enrollment and diversity of race and gender among registry enrollees and study participants. The goal of this study was to learn how enrollees describe registries with a foc...

Background Alzheimer’s disease (AD) prevention trials enroll cognitively unimpaired persons with AD biomarkers. The REVEAL‐SCAN trial tested whether knowledge of elevated amyloid affects these persons' cognitive test performance. Method Cognitively unimpaired adults age 65‐80 with a first degree relative with AD, intact cognitive and functional st...

Background: In the United States, family caregivers are the cornerstone of the support system for persons living with dementia (PLWD). This study examined how the coronavirus disease 2019 (COVID-19) pandemic challenged caregivers' capacity to deliver long term care services and supports to PLWD. Method: Participants (expected N=40) in this quali...

Background: Differences between men and women are common in Alzheimer's disease and related dementias (ADRD) research. What do they mean? To answer this, rigorous measurement is needed. We investigated current methods being used in ADRD research to measure sex/gender. Method: An online survey was sent to 38 federally-funded Alzheimer's Disease R...

Background Current practice guidelines recommend against Apolipoprotein E (APOE) testing. However, advances in Alzheimer’s disease (AD) research and care may soon change this. Objective To examine longitudinally the experience of learning an APOE result and, if an ɛ4 carrier, taking a disease-specific treatment to reduce one’s risk of AD. Methods...

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,...

Background/objectives: Disclosure of Alzheimer's disease (AD) risk information to cognitively unimpaired older adults may become more common if preclinical AD is shown to be identifiable and amenable to treatment. Little, however, is known about how families will react to this information. Design and setting: Semi-structured telephonic interview...

Several large clinical trials are underway to discover therapies to delay or prevent the onset of dementia caused by Alzheimer’s disease (AD). A common feature of these trials is that they are testing therapies in people who do not yet have changes in memory or thinking—that is, who are cognitively unimpaired—but who have a biologically defined ris...

Background As a result of caring for a person with dementia, caregivers of persons with Alzheimer’s disease (AD) may be uniquely aware of public stigma for persons with AD. Objective The purpose of this study was to compare self-identified caregivers and non-caregivers’ expectations of public stigma experienced by persons living with dementia. Me...

How older adults protect their cognitive health, reduce their risk for cognitive decline, and manage cognitive changes vary for men and women. To advance what is known about these differences and to promote inclusion of sexual and gender minorities in research, we are developing an empirically-informed research framework for studying gender effects...

Many studies show that caregivers for those with Alzheimer’s Disease (AD) are disproportionately female, but few studies have investigated how public attitudes influence this gender disparity. We analyzed secondary data from an experimental study of public reactions to AD dementia. Analysis included 944 respondents who read a vignette about a man w...

Background Studies of persons with Alzheimer’s disease (AD) and related dementias typically require “study partners” (SPs) to report on the subject’s wellbeing and function. But little is known about how who a SP is might impact on these reports. Knowing this may help inform the interpretation of AD research. Methods We analyzed data from 730 olde...

Background Studies of persons with Alzheimer’s disease (AD) and related dementias typically include “study partners” (SPs) who report on participants’ wellbeing and function. But little is known about what factors predict the type of person who steps into the role. Knowing this will inform barriers to recruitment into AD research. It may also offer...

Background Alzheimer’s disease (AD) secondary prevention trials typically require cognitively unimpaired individuals to learn the results of an amyloid PET scan. Additionally, they are required to enroll with a study partner who serves as a knowledgeable informant and often learns the participant’s amyloid PET scan result. The purpose of this study...

Background Alzheimer’s disease (AD) clinical trials, even trials recruiting cognitively normal populations, require participants to enroll with a “study partner” (SP). SPs serve as knowledgeable informants, reporting on participants’ cognitive and functional performance. The SP requirement can be a barrier to research participation, especially if a...

Embedded pragmatic clinical trials (ePCTs) present an opportunity to improve care for people living with dementia (PLWD) and their care partners, but they also generate a complex constellation of ethical and regulatory challenges. These challenges begin with participant identification. Interventions may be delivered in ways that make it difficult t...

Introduction: The safety of predicting conversion from mild cognitive impairment (MCI) to Alzheimer's disease (AD) dementia using apolipoprotein E (APOE) genotyping is unknown. Methods: We randomized 114 individuals with MCI to receive estimates of 3-year risk of conversion to AD dementia informed by APOE genotyping (disclosure arm) or not (non-...

Introduction We aimed to evaluate the resonance of public health messages promoting early detection of dementia in adult Latinos with a living older adult loved one. Method We conducted a mixed-methods study with focus groups and surveys to evaluate eight messages encouraging Latino adults to accompany their older loved one for cognitive assessmen...

Importance Clinical guidelines currently recommend against amyloid imaging for cognitively unimpaired persons. The goal of Alzheimer’s disease (AD) prevention, together with advances in understanding the pathophysiology of AD, however, has led to trials testing drugs in cognitively unimpaired persons who show evidence of AD biomarkers. Assuming the...

Seven states have legalized physician-assisted death (PAD) for competent, terminally ill individuals; these criteria exclude persons with dementia (PWD). However, there is ethical and policy discussion around expanding access to PAD to people with Alzheimer disease (AD).¹,2 Here, we present attitudes toward PAD of cognitively normal individuals enr...

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 repre...

Background The experiences of biomarker-ineligible cognitively normal persons can inform trial conduct and the translation of preclinical Alzheimer’s disease (AD) into clinical practice. Methods We interviewed 33 persons whose “not elevated” brain amyloid imaging biomarker result made them ineligible for a preclinical AD trial. Results Most parti...

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 ques...

Objective: This study examined how awareness of diagnostic label impacted self-reported quality of life (QOL) in persons with varying degrees of cognitive impairment. Method: Older adults (n = 259) with normal cognition, Mild Cognitive Impairment (MCI), or mild Alzheimer’s disease dementia (AD) completed tests of cognition and self-report questionn...

Introduction: Despite evidence that regular physical activity confers health benefits, physical activity rates among older adults remain low. Both personal and social goals may enhance older adults' motivation to become active. This study tested the effects of financial incentives, donations to charity, and the combined effects of both interventio...

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...

Background: The classification of Alzheimer's disease is undergoing a significant transformation. Researchers have created the category of "preclinical Alzheimer's," characterized by biomarker pathology rather than observable symptoms. Diagnosis and treatment at this stage could allow preventing Alzheimer's cognitive decline. While many commentato...

https://deepblue.lib.umich.edu/bitstream/2027.42/152781/1/alzjjalz201506337.pdf

Introduction The objective of this study was to develop a process to maximize the safety and effectiveness of disclosing Positron Emission Tomography (PET) amyloid imaging results to cognitively normal older adults participating in Alzheimer’s disease secondary prevention studies such as the Anti-Amyloid Treatment in Asymptomatic Alzheimer’s Diseas...

Background:Understanding the stigma that Alzheimer’s disease (AD) invokes can help inform public health interventions aimed at mitigating stigmatizing reactions. The present study asked: Do people form stigmatizing reactions from the label “Alzheimer’s disease” itself or the condition’s observable impairments? How does the condition’s prognosis mod...

Background: Financial incentives and peer networks could be delivered through eHealth technologies to encourage older adults to walk more. Methods: We conducted a 24-week randomized trial in which 92 older adults with a computer and Internet access received a pedometer, daily walking goals, and weekly feedback on goal achievement. Participants w...

Introduction The objective of this study was to develop a process to maximize the safety and effectiveness of disclosing Positron Emission Tomography (PET) amyloid imaging results to cognitively normal older adults participating in Alzheimer’s disease secondary prevention studies such as the Anti-Amyloid Treatment in Asymptomatic Alzheimer’s Diseas...

To inform whether the Alzheimer's Disease Neuroimaging Initiative (ADNI) should change its policy of not returning research results to ADNI participants, we surveyed investigators and research staff about disclosing ADNI biomarker information to research participants, with particular emphasis on amyloid imaging results. In April 2012, just before F...

https://deepblue.lib.umich.edu/bitstream/2027.42/153224/1/alzjjalz2012052118.pdf

https://deepblue.lib.umich.edu/bitstream/2027.42/153014/1/alzjjalz201105230.pdf