The proposed project, “Measurement and estimation of lucidity prevalence in persons with dementia and neurological disorders” is in response to RFA-AG-20-017 “Lucidity in Dementia (R21/R33)”. Our goals are to develop further a measure of paradoxical lucidity and to use this measure to estimate the frequency and correlates of occurrences by interviewing nursing home staff with respect to incidents observed in residents during the past one-month and six-month periods. In addition, we will refine the definition of lucidity and develop further a case-adjudication method for lucidity “diagnosis”. We propose to study staff reports related to 300 residents of one long-term care facility during the R21 phase and 1500 residents from 12 facilities during the R33 phase. Front line nursing home staff is ideally suited to inform research in paradoxical lucidity, an understudied phenomenon; likely due to the transience of the incidents and the lack of scientific reporting channels. The literature extant focuses on anecdotal evidence and case reports. The proposed study addresses four objectives: 1) develop a measure to assess the occurrence of lucidity, 2) analyze the psychometric properties of the measure, 3) develop a consensus conference methodology to determine possible, probable and definite cases, and 4) conduct a local, population-based study of lucidity using direct interviews with nursing home staff. This study will contribute to remediation of the lack of measurement tools in the field and provide robust basic knowledge about the phenomenon of lucidity. The proposed study refines our case finding methodology used in prior epidemiological research in nursing homes to study underlying latent constructs that are the subject of early-stage research and require definitional clarity. The proposed team has expertise in measurement and statistics, gerontology, neuroscience, epidemiology, geriatric medicine and psychiatry (Alzheimer’s disease), psychology, qualitative methods, and congregate care nursing. The aims are: Aim 1-R21: Develop a measure to describe episodes of lucidity among individuals with dementia, neurological and other illnesses and identify individual and episodic characteristics associated with events; Aim 2-R21: Develop further a procedure for case conferencing of reported events, using data from a pilot sample of 300 staff reports linked to 300 unique residents with and without lucidity events residing in a large 750-bed long term care facility; Aim 3-R33: Conduct a retrospective study of lucidity events in 12 long-term care facilities to describe their characteristics in comparison to residents without an event; Aim 4-R33: Determine the prevalence and frequency of events by diagnostic categories; Aim 5-R33: Examine the predictors of lucidity and its subtypes. Findings could result in the development of a case-reporting methodology for use by front-line staff to identify episodes of lucidity and to characterize lucidity events to inform future research.

The proposed study of paradoxical lucidity is very early stage; refinement of definition, development of a staff-report measure using qualitative and quantitative methods and prevalence estimation are important steps in understanding the phenomenon. Such findings will likely both provide useful tools and inform future basic and intervention research. The study will result in the development of a case-reporting method for use by front-line staff to identify episodes of lucidity, with the potential of involving family and staff caregivers as witnesses who may provide comfort to patients prior to death.