Paradoxical Lucidity in Severe End-Stage Dementia

Launched by NYU LANGONE HEALTH · Jan 31, 2022

Keywords

ClinConnect Summary

This clinical trial, titled "Paradoxical Lucidity in Severe End-Stage Dementia," aims to better understand a surprising phenomenon where some patients with severe dementia experience brief moments of clarity, known as paradoxical lucidity (PL). While cognitive decline in dementia is usually thought to be irreversible, these episodes suggest that there might be more going on than we currently understand. The study will involve two phases: the first phase will gather information through surveys and focus groups to assess new ways of tracking these moments, including using daily symptom diaries and real-time brain monitoring. If the initial findings are promising, the second phase will expand the study to include more participants and refine the methods used.

To be eligible for this study, participants must be over 18 years old and have advanced dementia, typically indicated by a specific scoring system. They should also be receiving hospice care without nutrition or fluids and have very little urine output. The aim is to find out more about how these brief moments of clarity occur, making it an important step in understanding the complexities of dementia care. Participants can expect to contribute their experiences and, if chosen, may also help in testing new tracking methods that could improve care for others in similar situations.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • Age \> 18 years
• • Advanced (severe) dementia diagnosed using the Global Deterioration Scale (GDS) with a score of 7 or the Palliative Performance Scale (PPS) with a score of less than 30%
• • Accepted for hospice care based on the Medicare eligibility guidelines
• • No longer being provided with nutrition or fluids
• • Anuria (dry diaper) or less than 200cc urine (almost dry diaper) in any 24-hour period
• Exclusion Criteria:
• • Cognitive or functional impairment due to a diagnosis other than dementia
• • Dementia with a GDS score \<7 (mild, moderate, moderately severe dementia). Please refer to rationale outlined for inclusion criteria 2.