What We Do
Care Delivery and Caregiver Support
- We partner with clinicians and families to develop and test innovative models of dementia care focused on pain and neuropsychiatric symptom management.
- We lead and collaborate on research aimed at elucidating determinants and consequences of neuropsychiatric symptoms.
- We conduct research on the perspectives, needs, and strengths of caregivers and persons with dementia.
Project: Advancing Our Understanding of Lucidity in Dementia
People living with Alzheimer’s disease and related dementias experience progressive losses in memory and thinking abilities. Yet, lucid episodes, described as periods of a remarkable return to previous abilities and awareness, have been reported by family members and health care providers. A better understanding of lucid episodes, particularly in advanced stages of dementia, has important implications for our understanding of disease progression, retained abilities, and care. Our team will lead one of the first large -scale studies focused on lucidity in dementia, with the goal of advancing observational and computational linguistic approaches for capturing and characterizing these events and their distinguishing features. Funding: National Institute on Aging
Project: The Personalized Approach and Targeted Interventions (PROACTIVE) Treatment Approach
Neuropsychiatric symptoms (such as agitation) are common and persistent for persons with dementia and often increase in number and severity during hospitalization. To address the need for interventional approaches to managing neuropsychiatric symptoms in the acute care environment, we partnered with clinicians to develop, pilot, and evaluate the Personalized Approach and Targeted Interventions (PROACTIVE) Treatment Approach– a low-cost, multi-faceted, nurse-led intervention designed to improve prevention and management of dementia-related neuropsychiatric symptoms in acute care. Funding: National Institute on Aging
Project: The Stakeholders Understanding of Prevention Protection & Opportunities to Reduce Frequent Hospitalizations (SUPPORT) Study
The SUPPORT Study (Stakeholders Understanding of Prevention Protection & Opportunities to Reduce FrequenT Hospitalizations) is a multi-site qualitative study aimed at understanding diverse stakeholders perspectives regarding preventable hospitalization and re-hospitalization events among people with dementia. This study is one part of a broader nation-wide effort to inform and improve national re-hospitalization policies, and identify effective community and caregiver-responsive strategies for bolstering resilience and supports that are protective against hospitalization. Funding: National Institute on Minority Health and Health Disparities
Treatment and Utilization Disparities
- We design informatics-driven solutions to improve recognition of Alzheimer’s and related dementias among under-represented and high-risk populations.
- We investigate disparities in health and social services utilization among diverse populations with dementia.
Project: Care Coordination Following Acute Illness Care
People with dementia experience frequent transitions in care that are often poorly managed and have disproportionately higher utilization rates of unscheduled acute care, which is associated with various negative outcomes. To mitigate these risks and outcomes, comprehensively addressing the transitional care needs of people with dementia during the post-acute care period is critical. Drawing from end-user input, electronic health record data, and Medicare claims data sources, we identify and evaluate coordination and communication of important care needs surrounding and following acute illness care episodes. Major areas of foci for this work have included: transitional care needs and communication during hospital to skilled nursing facility transitions, discharge communication quality regarding high-risk care needs (follow-up care specification, high-risk medications), pain management, and coordination related to dementia-specific care needs (neuropsychiatric symptoms). Funding: National Hartford Center of Gerontological Nursing Excellence, Mayday Fund
Project: Electronic Health Record-Based Phenotyping for Cognitive Impairment
Dementia and cognitive impairment are under-recognized during hospitalization, limiting opportunities to improve detection, diagnosis, and connection to appropriate care and services for cognitively vulnerable populations. Automated electronic health record (EHR) driven approaches hold promise for improving detection and supporting clinicians in recognition of potential cognitive impairment. Yet, these algorithms rely heavily on structured data sources (i.e., ICD codes, medication events), which limit utility among underrepresented populations who are systematically less likely to receive care, diagnosis, and treatment. Our team has derived an electronic health record-based phenotype definition for identifying potential cognitive impairment during acute illness care by harnessing unstructured (free text) notes in the electronic health record. We are now leading validation of this and other phenotype models in community-based and longitudinal cohorts. Funding: National Institute on Aging
Research Ethics and Equity
- We investigate fundamental causes of disparities in Alzheimer’s and dementia research participation.
- We develop participant and community-centered models of equitable research partnerships.
- We investigate and consider solutions to ethical and practical challenges of inclusion of people with dementia in research.
Project: Brain Health Community Registry
Existing paradigms and practices around dementia research recruitment often do not recognize or respond to priorities, concerns, and constraints relevant to participants from diverse backgrounds. To address these gaps, we have developed and applied a research recruitment and engagement model and registry that centers and prioritizes research participant needs. Funding: Wisconsin Alzheimer’s Disease Research Center REC Scholars Program, University of Wisconsin-Madison Vilas Award, NACC
SUPPORT is a research study funded by the National Institutes of Health and led by investigators at the University of Wisconsin-Madison. This study is one part of a nation-wide effort to inform and improve national re-hospitalization policy.
Lucidity in Dementia
We are thrilled to lead one of the first large-scale studies to investigate lucid episodes that occur among people living with dementia in advanced disease stages.
Wang, S., Gustafson, S., Deckelman, C., Sampene, E., Daggett, S., Loosen, J., Robison, R., Pulia, M.S., Knigge, M., Thibeault, S., Gilmore-Bykovskyi, A.L., Kind, A.J.H., &...
Gilmore-Bykovskyi, A., Block, L., Benson, C., Fehland, J., Botsch, M., Mueller, K.D., Werner, N., & Shah, M.J. (2022). The Gerontologist. (Accepted) PMID: 35797987 PMCID: PMC...
Toward harmonization of strategies for investigating lucidity in AD/ADRD: A preliminary research framework
Gilmore-Bykovskyi, A.L., Griffin, J.M., Muller, K.D., Parnia, S., & Kolanowski, A. (2022). Alzheimer's & Dementia. Epub Ahead of Print. PMID: 35757902 PMCID: PMC in...
A human factors and ergonomics approach to conceptualizing care work among caregivers of people with dementia
Werner, N., Rutkowski, R., Holden, R., Ponnala, S., & Gilmore-Bykovskyi, A. (2022). Applied Ergonomics. Epub Ahead of Print. PMID: 35689868 PMCID: PMC in Process. Read...
Written discharge communication of diagnostic and decision-making information for persons living with dementia during hospital to skilled nursing facility transitions
Block, L., Hovanes, M., & Gilmore-Bykovskyi, A.L. (2022). Geriatric Nursing. PMID: 35569425 PMCID: PMC9327092 Read publication.