The NIH-funded Lucidity in Alzheimer’s and Dementia, or LEAD, Network will advance science on lucidity in late-stage Alzheimer’s Disease and dementia.
The University of Wisconsin School of Medicine and Public Health, in collaboration with Mayo Clinic, has been selected by the National Institute on Aging to lead the nation’s first research network dedicated to studying and measuring lucidity in Alzheimer’s disease and related dementias.
Lucidity can involve brief, unexpected moments when a person with advanced dementia suddenly speaks clearly, recognizes loved ones or shows abilities thought to be permanently lost. Researchers are increasingly focused on systematically measuring these episodes to better understand preserved brain function and inform care and caregiving.
To accelerate progress, the Lucidity in Alzheimer’s and Dementia, or LEAD, Network will establish national research priorities, develop and share standardized tools to measure lucidity and its impact on care and caregiving, and advance research to address key measurement challenges. A defining strength of the network is its interdisciplinary approach, bringing together experts in dementia and measurement science from neuroscience, psychology, medicine, caregiving and data science.
The LEAD Network is supported by a five-year, $4 million investment by the National Institutes of Health — positioning the University of Wisconsin as a national leader in an emerging and critically important area of aging research.
Co-leading the new initiative are Andrea Gilmore-Bykovskyi, associate professor of emergency medicine and vice chair of research, BerbeeWalsh Department of Emergency Medicine, UW School of Medicine and Public Health, and Joan M. Griffin, professor of health services research, Mayo Clinic Kern Center for the Science of Health Care Delivery, Mayo Clinic Rochester.
Gilmore-Bykovskyi previously led one of the first large-scale studies funded by the NIH to investigate family caregiver and hospice clinician experiences with and perspectives on lucid episodes in people living with dementia, as well as observational approaches to studying these events.
“Lucidity science has advanced rapidly over the past five years, but the field has lacked the foundation needed to study these moments rigorously and responsibly at scale,” said Gilmore-Bykovskyi, who has a doctorate in nursing and is a registered nurse. “Addressing measurement gaps that presently limit the field is central to the LEAD Network’s mission.”
A brief window into resilience — and possibility
More than 7 million Americans age 65 and older are living with Alzheimer’s disease and related dementias, conditions that progressively erode memory, communication and daily function.
Lucid episodes in advanced dementia can be deeply meaningful for families, yet they remain poorly understood, in part because they have been understudied, according to Gilmore-Bykovskyi. These moments are rare, brief and unpredictable, often identified only after the fact through caregiver reports. Few validated tools exist to detect or measure lucidity in real time or assess its impact on care and clinical decision-making in late-stage disease.
“Lucidity defies long-held assumptions about advanced dementia,” Gilmore-Bykovskyi said. “It raises important questions about brain resilience, while also carrying profound emotional and clinical significance for families who suddenly witness a moment of clarity in a loved one.”
Understanding the mechanisms behind lucidity could help explain how some abilities are preserved or briefly restored and help guide care strategies that better support both patients and caregivers.
Building a national framework for studying lucidity
During its first two years, the LEAD Network will conduct a national consensus process to define research priorities and measurement needs in lucidity science, engaging scientific experts alongside people with lived experience with dementia, including those with the condition as well as family caregivers. Priorities will span three areas: detecting and characterizing lucidity, understanding its impact on care and caregiving, and exploring links to underlying neural mechanisms and resiliency.
The network will also develop shared research infrastructure, including common data elements and a repository of secondary data resources, such as interviews and surveys, to support standardized data collection and accelerate future studies.
In later years, the network will support pilot studies designed to seed larger, multi-site research projects, and host workshops, webinars and annual meetings to train investigators and share findings.
“The LEAD Network is designed to align methods and priorities across institutions, supporting collaboration in lucidity research across care settings and populations,” said Griffin, a Mayo Clinic researcher with more than 25 years of experience studying how care is delivered and how it affects patients and families. “It provides a structured environment for researchers working in this area to coordinate their efforts.”
The LEAD Network will collaborate with more than 35 academic medical centers and leading professional organizations focused on aging and Alzheimer’s disease and dementia, leveraging NIH’s investment to elevate lucidity science across multiple disciplines and research communities.
How moments of lucidity could help reshape dementia care
Understanding lucidity has considerable implications for the future of dementia care and research, Gilmore-Bykovskyi says.
For families, witnessing a loved one in a moment of lucidity can shape care decisions and intensify emotional experiences, including grief. For clinicians, greater insight may inform communication, care planning and end-of-life support. For researchers, lucidity in advanced dementias offer a rare window into how the brain may retain or briefly recover function despite advanced neurodegenerative disease.
“With the LEAD Network, we aim to build a scientific community with shared purpose and tools while directly supporting new investigators in this field, so clinicians and families can navigate these moments together with greater clarity and care,” she said.
For more information, visit leadnetwork.wisc.edu or contact LEADNetwork@medicine.wisc.edu.
This research is supported by the National Institutes of Health (R61AG092355) and is jointly led by the University of Wisconsin–Madison and Mayo Clinic Rochester.