Decoding Death and Dying in people with Dementia by Digital thanotyping

Introduction

How can we recognize that a person with dementia is at the end of life? When we are dying, our physical, mental, and social abilities are gradually declining. No reliable method of predicting perceived dying currently exists although the technology is available (sensors, algorithms).

Project Aim

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. This project focuses on the case of dying people with dementia as one of the most vulnerable and difficult to study groups.

Methodology

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

The project aims to decode the point of no return as the beginning of perceived dying.

Hypothesis and Objectives

To obtain this outcome in nursing home patients with dementia, I 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:

1. Collect data using sensors and validated assessment scales.
2. Develop estimation methods for BPSD from sensor measurements.
3. Develop digital tools to capture the expression of pain.
4. Determine the relationship between breathing and oral symptoms.
5. Develop models for symptom interdependencies at the end of life and the point of no return.
6. Perform human-in-the-loop validation of developed tools, models, and algorithms.

Significance

The ground-breaking interdisciplinary novelty of 5-D endeavors to enhance our 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.