Paradoxical Lucidity in Severe End-Stage Dementia: A Mixed Methods Prospective Study
The Parnia Lab is recruiting participants for its mixed-methods study exploring why and how some people with severe end-stage dementia regain the ability to recall certain memories, verbally communicate, or recognize people, a phenomenon called paradoxical lucidity.
Why This End-Stage Dementia Study May Be of Interest to You
As part of this project, we are identifying people who have a diagnosis of severe dementia and who are close to the end of life to possibly record episodes of lucidity through an observational study. We are planning on recruiting participants for a trial on Paradoxical Lucidity that involves using video electroencephalogram (vEEG) monitoring, audio/visual recordings, and symptom/daily tracker diaries in order to observe dementia patients who may be experiencing lucid events.
As many of these lucidity events are witnessed by healthcare workers, family members, friends, and caregivers at the bedside of dying patients we are also conducting a survey and focus groups that will evaluate and better understand lucidity events observed and witnessed by health care providers and families who are likely to be involved in the care of terminally ill patients.
If you are caring or have cared for someone with severe dementia, we would like to invite you to participate in this research study.
Who May Participate in the Observational Study
If you can answer “yes” to the following questions, your loved one may be eligible to participate in this study:
- Is your loved one older than 18 years old?
- Has your loved one been diagnosed with advanced dementia?
- Is your loved one towards the end of life?
- Is your loved one currently in a hospital, hospice center, hospital or nursing home?
How You Can Participate in This Observational Study
If you would like information about this study, please contact us by phone at 646-501-6923 or email at firstname.lastname@example.org for further assistance.
We are actively seeking sites to collaborate with us in our study on Paradoxical Lucidity. Hospice centers, nursing homes, medical centers and other long-term care facilities with dementia patients that are interested in collaborating with this study can reach out to us at by phone at 646-501-6923 or email at email@example.com.
Who May Participate in the Survey or Focus Groups
If you can answer “yes” to the following questions, you may be eligible to participate in this study:
- Are you currently 18 years or older?
- Have you cared for or lived with someone with advanced dementia?
- Have you witnessed an unexpected return of mental clarity in someone with dementia?
How the Survey or Focus Group Will Take Place
Family members, friends, healthcare workers, and other caregivers who have witnessed lucidity in people with dementia are invited to complete an online survey or to participate in a focus group.
The online survey will ask you to share basic information about the person with dementia and about any lucid episodes you may have witnessed. The focus groups will take place virtually and will convene a small group of people to answer questions and discuss their experiences, guided by a moderator.
How You Can Participate in This Survey or in a Focus Group
If you are interested in participating in the survey, please complete the paradoxical lucidity in severe end-stage dementia survey.
If you are interested in participating in the focus group, please answer the following pre-qualifying questions in the paradoxical lucidity for end-stage dementia focus group screening.
These can be completed on a computer, phone, tablet, or other electronic device with internet access. If you are interested in participating in the study but cannot complete the survey or the focus group screening, you may contact us by phone at 646-501-6923 or email at firstname.lastname@example.org for further assistance.
This study has been approved by the Institutional Review Board at NYU Grossman School of Medicine (Study ID: i20-01854). If you have any questions regarding this study or would like to request more information, please contact us.