Cognitive decline in dementia is considered irreversible, however episodes of paradoxical lucidity (PL) in severe dementia suggest other mechanisms may be in play. Beyond anecdotal reports of transient PL events occurring in patients predominantly in late-stage dementia and typically lasting anywhere from a few minutes to several hours, little is known about PL. The study team proposes to develop and conduct a mixed methods prospective study of PL during end stage advanced dementia, creating a definition and measurement scale for PL in advanced dementia, and identifying the potential electro cortical biomarkers of PL in advanced dementia. This study will be divided in two phases: Phase I and Phase II. During Phase I, the study team will collect sufficient and necessary data through an online survey and focus groups as well as assess the safety and feasibility of using symptom diaries (also known as daily trackers or journals) and real-time video EEG monitoring (vEEG). After preliminary review of the study procedures, the PI will decide whether to move onto the Phase II. The second phase will aim to expand the study population and refine study methods as well as create a definition and measurement scale for PL in advances dementia.
Age range
18 Years
Sex
ALL
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Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.
The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.
A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.
Phase I and II - Number of self-reports of patient distress/discomfort in relation to symptom diary use and recording of potential episodes of paradoxical lucidity (PL) using mobile devices
Timeframe: up to Day 7
Phase I - Number of self-reports of informants' distress or discomfort due to the presence of the video EEG device.
Timeframe: up to Day 7
Phase I - Number of families who express interest in the study and contact the research team
Timeframe: up to Day 7
Phase I - Number of successful informed consents obtained from family members/legally authorized health care proxies
Timeframe: up to Day 7
Phase I - Number of days taken for patients to die after being identified by hospice staff with a life expectancy </= 7 days
Timeframe: up to Day 7
Phase I - Number of diary reports completed and returned to research staff
Timeframe: up to Day 7
Phase I - Time taken to establish video EEG monitoring in homes or nursing homes
Timeframe: up to Day 7
Phase I - Total number of instances in which video EEG monitoring was successfully initiated
Timeframe: up to Day 7
Phase I - Average number of days for which video EEG monitoring was completed
Timeframe: up to Day 7