Decoding Death and Dying in People With Dementia by Digital Thanotyping

Status: Recruiting
Location: See location...
Intervention Type: Other
Study Type: Observational
SUMMARY

How can healthcare professionals recognize that a person with dementia is at the end of life? When people are dying, their physical, mental, and social abilities are gradually declining. No reliable method of predicting perceived dying currently exists although the technology is available (sensors, algorithms). The aim of Decoding Death and Dying in Dementia by Digital thanotyping (5-D) is to provide methods and tools to diagnose and describe dying to an unprecedented level of accuracy and robustness, within a timespan larger than is possible now, focusing on the case of dying people with dementia as one of the most vulnerable and difficult to study groups. 5-D combines clinical assessment tools with wearable sensing technology to monitor a) pain and distressing symptoms, b) behavioral and psychological symptoms in dementia (BPSD), c) oral changes, and to decode the point of no return as the beginning of perceived dying. To obtain this outcome in nursing home patients with dementia, the investigator will test the main hypothesis: from monitoring the evolution of thanotype components over time and their interdependencies, the prediction of the point of no return is possible. The objectives of 5-D are: O1. Collect data using sensors and validated assessment scales. O2. Develop estimation methods for BPSD from sensor measurements. O3. Develop digital tools to capture the expression of pain. O4. Determine the relationship between breathing and oral symptoms. O5. Develop models for symptom interdependencies at the end of life and the point of no return. O6. Perform human-in-the-loop validation of developed tools, models, and algorithms. The ground-breaking interdisciplinary novelty of 5-D endeavors to enhance the understanding of end-of-life underlying pain and symptoms in people with dementia. Advancing our theoretical knowledge to uncover how, when, and why perceived dying can be identified opens the doors for transferable research across several scientific fields

Eligibility
Participation Requirements
Sex: All
Minimum Age: 65
Healthy Volunteers: f
View:

• Nursing home resident

• \>64 years old

• People with dementia or who have a likely diagnosis of dementia

• Score of \<4 on the 4 A's Test for Delirium (4AT) will be required for inclusion (no delirium)

Locations
Other Locations
Norway
Bergen Røde Kors Sykehjem AS
RECRUITING
Bergen
Contact Information
Primary
Bettina S. Husebø, PhD
bettina.husebo@uib.no
48094660
Backup
Monica Patrascu, PhD
monica.patrascu@uib.no
91198669
Time Frame
Start Date: 2024-01-01
Estimated Completion Date: 2028-12-31
Participants
Target number of participants: 480
Treatments
Participants
Persons with dementia
Related Therapeutic Areas
Sponsors
Collaborators: Yale University, Bergen kommune, Leiden University, Tohoku University, Harvard University
Leads: University of Bergen

This content was sourced from clinicaltrials.gov