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People with dementia at the end of life are one of the most vulnerable and difficult groups to study, as they have difficulties in expressing themselves. The incidence of dementia is expected to triple by 2050 in Europe. Studies show that people with dementia in nursing homes often experience behavioral and psychological symptoms (agitation, depression, anxiety, apathy, psychosis, and sleep and appetite disturbances), as well as pain. Under-treatment and over-treatment may aggravate these symptoms, reducing quality of life. Moreover, in the process of dying, our physical, mental, and social capacities gradually decrease, making proper treatment challenging. A greater understanding of the end of life for people with dementia is of the utmost importance to improve their care. Additionally, almost 40% of people with dementia die unexpectedly. If we can recognize when the person is in the final phase, we can alert the family and make the end as comfortable and soothing as possible for both the individual and their loved ones.

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, 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, c) oral changes, and to decode “the point of no return” as the beginning of perceived dying. 

Using new technology

In this project, we will use wearable and environmental sensor technology to monitor the patients' pain, behavioral and psychological symptoms, and changes in oral status. The sensors are designed to avoid noticeable discomfort or distress. Garmin Venu detects pulse and movement, and Somnofy detects sleep patterns, movement, and air quality.  

Interdisciplinary team

With Bettina Husebø as the principal investigator on the project, Monica Patrascu coordinating the model development, postdoctoral researchers Brice Marty and Kamilla Haugland-Pruitt, PhD student Anne Therese Hatle, and research nurse Tanja Lukkari, the 5-D team is a strong interdisciplinary team with multifaceted skillsets, primed to investigate the process of dying with dementia.  More PhDs, postdocs, and researchers in engineering and dentistry are in the process of being recruited.  

The 5-D project involves many people with different backgrounds, such as clinicians, nurses, dental technicians, occupational therapists, data scientists, and neuroscientists.

Complementary studies

We are running complementary sub-studies that look at specific parts of the 5-D project.

The DIPH.DEM study is coordinated by PhD candidate Lydia Boyle and financed by Helse Vest and is performed in collaboration with the Bergen Red Cross Nursing Home. Here, we are mapping the changes in the activity of people with dementia at the end of life. DIPH.DEM functions as a pilot for the 5-D project.

The ORAL.DEM study is also financed by Helse Vest. Manal Mustafa is leading this part of the project, and Farzana Haque is a research assistant in odontology, investigating oral health in people with dementia at the end of life. People with dementia are classified as a high-risk group for the development of oral diseases, further complicating their situation. This study aims to evaluate the oral health status of people with dementia at the end of life and identify the best measures to enhance oral care. 

Education

At the participating nursing home, we conduct regular educational sessions for the staff to build a common frame of reference and learn to use the questionnaires and the technology.

Impact 

The results of the 5-D study can provide crucial information to optimize individualized treatment for people with dementia. A better understanding of how, why, and when people with dementia have reached the last phase of life will provide knowledge that can also be transferred to other scientific fields or diseases. This might improve the quality of life, including the end of life, and provide better and personalized palliative care to those who cannot express their symptoms or pain. In the long run, we hope we can support older adults throughout their end of life at home.

Current status

Ethical approvals are obtained from the National (NEM) and Regional Committee for Research Ethics (REK). Ten nursing homes in the municipalities of Bergen, Alver, and Voss have joined the project. Currently, the recruitment process and educational meetings have started in six nursing homes: Bergen Red Cross Nursing Home, Stiftelsen Metodisthjemmet, Stiftelsen Domkirkehjemmet i Bergen, Stiftelsen Betanien Bergen, Stiftelsen Adventistkirkens Sykehjem Nordås, and Vetleflaten Omsorgssenter. 

Data collection has already started in the first three nursing homes, and we estimate to have approximately 60 participants with completed basement measurements in 2024.