About

Andrea Gilmore-Bykovskyi, PhD, RN, is an Associate Professor in the BerbeeWalsh Department of Emergency Medicine at the University of Wisconsin School of Medicine and Public Health. She serves as Vice Chair for Research and holds the John and Tashia Morgridge Chair of Emergency Medicine Research. Her research focuses on promoting effective and meaningful care and research for people living with and at risk for Alzheimer’s disease and related dementias (ADRD). Her work aims to identify and intervene on health system barriers to optimal ADRD-specific care and patient/caregiver-centered outcomes, with a particular emphasis on addressing these priorities among medically underserved populations during emergency department care, hospitalization, and in advanced disease stages. Dr. Gilmore-Bykovskyi has led advances in ADRD health services research, establishing frameworks to improve social impact and belonging, and has coauthored over 80 publications. She is actively involved in national initiatives, co-leading the first research network to study lucidity in dementia and contributing to efforts to improve representation in clinical research. Her contributions have been recognized through awards such as the 2021 Terrie Fox Wetle Rising Star Award in Health Services and Aging Research.

Selected publications

• Emergency Nurses’ Perspectives on Adopting Geriatric Screenings for Cognitive Impairment: A Qualitative Study

  Journal of Emergency Nursing · 2025-01-13 · 5 citations

  articleOpen access
  PublisherOA PDFDOI

• Engaging Community Reviewers: The Geriatric Emergency Care Applied Research (2.0)—Advancing Dementia Care Network Approach

  Journal of the American Geriatrics Society · 2025-05-16

  articleOpen access

  A core tenant of the Geriatric Emergency care Applied Research Network 2.0-Advancing Dementia Care (GEAR 2.0-ADC) is the inclusion of community members during all stages of clinical research. As such, we deliberately integrated and supported patient and public involvement in the evaluation and selection of GEAR 2.0-ADC Pilot Research Grants by developing and adapting traditional grant application review structures, with input from community members, to create the GEAR 2.0-ADC Community Review Committee approach. Community members, including persons living with dementia, effectively participated in all three rounds of research grant application review and selection, complementing the traditional scientific review process. The structure and flexibility of the GEAR 2.0-ADC Community Review Committee approach serve as a model for patient and public grant application review involvement with strong potential for applications across grant reviews in other medical specialties.

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• A prospective observational study of lucid episodes in advanced dementia

  The Gerontologist · 2025-07-31 · 1 citations

  article1st authorCorresponding

  BACKGROUND AND OBJECTIVES: Recent studies have provided new insights into lucid episodes (LEs) in people living with advanced dementia, but direct observational data documenting LEs are lacking. This prospective observational aimed to detect, characterize, and validate potential LEs. RESEARCH DESIGN AND METHODS: Data from longitudinal audiovisual observations of participants living with advanced dementia (N = 20) were coded to generate measures of verbal output/expressions and nonverbal communicative actions (e.g., coherence, eye gaze). Potential LEs underwent a structured multi-informant review for validation. We applied generalized estimating equations to compare features of validated LEs to a random 20% sample of participant data used to estimate baseline functioning. Data were fit to a homogeneous Poisson point process to estimate the number of observations needed to accurately estimate the prevalence of LEs. RESULTS: Across 539 observations, nine validated LEs were evidenced by three participants (range 2-4). Shared significant differences across LEs included an increased rate of meaningful vocalizations, although heterogeneity in features of LE was observed. DISCUSSION AND IMPLICATIONS: These findings represent the first prospectively documented and directly observed cases of LEs in advanced dementia. Features of LEs vary across individuals, but marked recovery of verbal communication abilities was a defining feature across all events. Lucid episodes occur infrequently, but these findings suggest that they may not be as rare as initially hypothesized. Larger samples and more diverse cohorts are needed to inform robust estimates of incidence and prevalence. Measurement advances to detect and characterize these events are critical to elucidating the underlying mechanisms driving these events and advancing supportive interventions.

  PublisherDOI

• The Real-World Context of Long-Term Care Data

  Journal of the American Medical Directors Association · 2025-04-28

  letterSenior author
  PublisherDOI

• What Matters Most to People Living With Dementia and Their Care Partners During Emergency Department Visits

  Journal of the American Geriatrics Society · 2025-12-08

  articleOpen accessSenior authorCorresponding

  INTRODUCTION: Of the 6 million people living with dementia (PLWD) in the United States, half visit an emergency department (ED) annually. Little is known about the specific emergency care preferences and priorities of PLWD and their care partners. This descriptive qualitative study engaged PLWD and care partners to identify their ED care priorities and the factors that influence their overall evaluation of ED care. METHODS: We recruited PLWD receiving care in a large academic ED and their care partners to participate in individual or dyadic interviews. Interviews were analyzed using thematic analysis and member checking interviews were completed to confirm and expand on study findings. RESULTS: We conducted interviews with 55 participants (N = 19 PLWD, 24 care partners, 6 dyads). PLWD and care partners evaluated ED care experiences through a summative lens shaped by: (1) universal priorities common across all participants and (2) individual values that varied in importance and quality between individuals. Universal priorities included feeling respected, clear communication, and being informed about and involved in their emergency care decisions. Individual values included preferences around the who and how of decision-making, attention to cognitive health, and degree of escalation of care. Several contextual factors shaped the appraisal of ED visits including the timing of evaluation and nature of the precipitating event (acute/unknown cause vs. chronic/known or suspected cause). CONCLUSION: Findings suggest that interpersonal interactions, including being informed about care and involved in decisions, strongly influence the evaluation of ED visits for PLWD. These findings can support the development of person-centered outcome measures capable of evaluating these priorities.

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• Associations of retention in care by visits or lupus-specific labs with acute care among young adults: A medicare cohort study

  Lupus · 2025-07-18

  articleOpen access

  Objective While quality lupus care is associated with lower lupus-related damage, the impact of access and process quality measures on other lupus outcomes remains unclear. Given high acute care in young adults, our objective was to evaluate two process quality measures, visit-based retention in lupus care and receipt of lupus-specific serologic testing, and associations with subsequent acute care use. Methods This cohort study used a 20% national sample of young adult (ages 18–35) Medicare beneficiaries with lupus to first measure visit-based retention in rheumatology care and receipt of ≥1 complement or dsDNA test over 1 year. Acute care use (Emergency Department visits and hospitalizations) was then assessed in the subsequent 6 months. Associations of visit-based retention and serologic testing with acute care were evaluated with Cox regressions. Results Among 1036 young adults with lupus, acute care use was very high – nearly 60% at 6 months. Observed acute care-free survival time was longer in patients who had visit-based retention (154 vs 104 days, p = 0.02) or serologic testing (166 vs 101 days, p = 0.002). Only 28% of beneficiaries had serologic testing, but this was associated with 21% lower incidence of acute care (aHR 0.79, 95% CI 0.65, 0.97) after adjustment; visit-based retention was not associated with acute care after adjustment. Conclusion Receipt of complement or dsDNA antibody testing, a lupus-specific care quality indicator, was associated with reduced acute care use in young adults. Improving lupus care quality measures, like complement or dsDNA testing, may improve lupus outcomes including reduced acute care use.

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• Examining the Impact of Interface Design and Nurse Characteristics on Satisfaction With Machine Learning Decision Support Explanations

  CIN Computers Informatics Nursing · 2025-05-08

  articleSenior author

  Machine learning has the potential to drive the next generation of clinical decision support systems by identifying patterns in health data to enhance efficiency and safety. Explanatory information is intended to help clinicians understand the outputs of these complex systems. No studies have evaluated associations between display design strategies or nurse characteristics and nurse satisfaction with machine learning explanatory information. This gap leaves much unknown about designing explanatory displays that meet nurses' information needs, supporting effective use and adoption in practice settings. To address this, we aimed to describe nurses' satisfaction with explanatory information displays for machine learning clinical decision support, examine associations between the format and complexity of explanatory information and nurse satisfaction, and investigate the influence of nurse characteristics, such as numeracy and graphical literacy, on satisfaction. Our findings indicate that local feature-based explanatory information may not satisfy nurses' information needs, and that nurse age, artificial intelligence training level, and numeracy influence preferences. We found no significant effects of the format or complexity of explanatory displays on satisfaction. These insights into the usability of machine learning clinical decision support for nurses can inform the design of more effective displays.

  PublisherDOI

• Lucid episodes in people with advanced dementia: characterizing caregiver reports to advance definition and measurement of episodes

  The Gerontologist · 2025-11-10

  articleOpen accessSenior author

  BACKGROUND AND OBJECTIVES: Lucid episodes (LEs) in advanced dementia are characterized by spontaneous, transient recovery of functional abilities. Despite recent increases in research on this previously understudied phenomenon, standard definitional criteria are lacking, presenting challenges for research. Researchers have proposed a preliminary framework to guide uniform labeling and operationalization of salient data elements for investigating LEs and developing definitional criteria. This study leverages this framework to characterize reports of LEs from caregivers and advance their definition and measurement. RESEARCH DESIGN AND METHODS: Family caregivers (N = 259) completed an electronic survey with quantitative and open-ended questions about LEs they witnessed (N = 479 episodes). Respondents were purposively sampled for qualitative interviews. Open-ended question responses (n = 208) and in-depth interviews (n = 24) were analyzed using content analysis. RESULTS: Caregiver descriptions suggest that the content and context of LEs are heterogeneous. Descriptions included observable changes from baseline, with behavior or communication that was distinguishable from routine cognitive fluctuations. LEs were sometimes, but not always specified by logically organized actions; recognition or awareness of people, emotions, and surroundings; and insight of their cognitive limitations. Many LEs required deep personal knowledge to attribute it as a meaningful shift. DISCUSSION AND IMPLICATIONS: Findings suggest that definitional features may universally specify a significant return of ability with more flexible criteria for how this return manifests in observed actions and domains of recovery (i.e., insight, function, and communication). The impact of LEs on observers may be better measured separately, although further research should explore this.

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• Eating and swallowing care disparities in persons with dementia: A conceptual framework

  Alzheimer s & Dementia · 2025-02-01 · 2 citations

  articleOpen access

  INTRODUCTION: Eating and swallowing difficulties are prevalent and distressing among persons living with dementia (PLWD). These challenges may be especially burdensome for PLWD in lower-resourced settings, where environmental factors such as social support, health-care infrastructure, and food access are critical for meeting quality standards of eating and swallowing care. However, clinical practices and research methods have not sufficiently focused on the lived environment to promote high-quality, socially and culturally aligned management approaches. METHODS: To address this gap, we developed a conceptual framework informed by the literature, grounded in ecological systems and fundamental cause theories, and refined through iterative discussion. RESULTS: Our framework highlights individual-, system-, and community-level factors and resources influencing person-centered eating and swallowing care for PLWD. It identifies areas at risk for inequitable care along the swallowing management continuum. DISCUSSION: We propose future research areas to help health-care providers reconcile the demands of eating and swallowing care with the lived realities of PLWD. HIGHLIGHTS: There are eating/swallowing care disparities among persons living with dementia. We introduce a conceptual framework applying social and structural determinants of health to eating/swallowing care. We also recommend areas to address disparities and improve eating/swallowing care.

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• Meaningful to whom? Minimal clinically important differences and the priorities of individuals living with dementia for everyday function

  Alzheimer s & Dementia Translational Research & Clinical Interventions · 2025-01-01 · 2 citations

  articleOpen access1st authorCorresponding

  Alzheimer's disease and Alzheimer's disease related dementias (AD/ADRD) have a significant impact on an individual's functional cognitive abilities, highlighting the need to prioritize measures of function in evaluating minimally clinically important difference (MCID) thresholds in AD/ADRD research. Input directly from individuals living with AD/ADRD on measures of function are lacking in MCID discussions, including what it means to live with AD/ADRD and what type and degree of improvements are most meaningful across the disease continuum. Most measures for assessing function in AD/ADRD trials are largely focused on basic and instrumental activities of daily living (BADL, IADL), which lack aspects of everyday function that matter most to individuals living with AD/ADRD. Expanding outcome evaluation to other dimensions of everyday function and diversifying measurement approaches is essential for optimizing inclusion of personally meaningful aspects of everyday function prioritized by individuals living with AD/ADRD and improving detection of potentially more sensitive changes in functioning. This perspective outlines four directions to expand and integrate what matters most to individuals living with AD/ADRD into trial outcome evaluation, including (1) consideration of how what matters most to individuals living with AD/ADRD may change across the disease continuum from mild to advanced dementia, (2) identification and evaluation of goals around strengths-based domains such as social participation rather than solely emphasizing deficits and losses, (3) utilization of goal-attainment scaling to more specifically match individually-specific functional goals, and (4) strengthening the inclusion and use of self-report and performance-based measures of function and triangulating these measures with informant-report measures. Highlights: Alzheimer's disease and Alzheimer's disease related dementias (AD/ADRD) have a significant impact on an individual' functional cognitive abilities, of which changes in these abilities are measured through detection of minimally clinically important difference (MCID) thresholds to determine the effectiveness of AD/ADRD clinical trials.Widely used measures for assessing MCID thresholds in AD/ADRD trials focus on basic and instrumental activities of daily living, presenting opportunities to expand measurement of MCID to account for other dimensions of everyday function that are prioritized by individuals living with AD/ADRD.To expand outcome evaluation and improve integration of aspects of functioning that matter most to people living with AD/ADRD, we identify opportunities to incorporate more diverse strategies via goal-attainment scaling, self-report, and performance-based measures as appropriate. We also highlight the importance of incorporating strengths-based domains such as social participation, moving beyond deficit-focused assessment of functioning.

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Awards & honors

• 2021 Terrie Fox Wetle Rising Star Award in Health Services a…
• Co-Chair the 2023 National Research Summit on Care, Services…
• Advancing Research on Care and Outcome Measurement (ARCOM) A…
• Paul B. Beeson Emerging Leaders Career Development Award (K7…