The 5-D Project

Through systematic collection of data from Norwegian nursing homes, the project develops novel methods and tools that can provide a more precise understanding of pain and other symptoms at the end of life, thereby supporting more personalized and compassionate end-of-life care.

Dementia prevalence in Europe is projected to triple by 2050, highlighting the urgency of improving symptom treatment and end-of-life care for this population. People with dementia in the terminal phase represent one of the most vulnerable and clinically complex patient groups, largely due to impaired communication and behavioural expression. Recent evidence shows that individuals with advanced dementia frequently experience neuropsychiatric symptoms, such as agitation, depression, anxiety, apathy, psychosis, and disturbances in sleep and appetite, alongside pain, which remains under-recognized and undertreated. Both under-treatment and over-treatment can exacerbate distress and compromise quality of life.

As death approaches, progressive decline in physical, cognitive, and social functioning further complicates symptom management. Studies indicate that pain and neuropsychiatric symptoms often persist in the last weeks of life, yet symptom burden is inconsistently assessed, leading to variability in care. Nearly 40% of individuals with dementia die unexpectedly, underscoring the need for timely recognition of the terminal phase to enable family involvement and ensure comfort-oriented interventions. A deeper understanding of the dying process in dementia, including functional trajectories, pain patterns, and behavioural symptoms, is essential for developing person-centred strategies that uphold dignity and optimize quality of life in the final stage.

The 5-D project aims to integrate clinical assessment tools with wearable sensor technology to monitor (a) pain and distressing symptoms, (b) behavioural and psychological manifestations of dementia, and (c) oral health changes, with the goal to identify the ‘point of no return’ – the onset of perceived dying.”

Using sensor technology to detect symptoms

The 5-D project employs wearable and environmental sensor technologies to monitor pain, behavioural and psychological symptoms, and we also monitor changes in the oral health status. The devices are designed to minimize discomfort and distress. The Garmin Venu 3S tracks heart rate and physical activity, and the Somnofy radar (VitalThings, Trondheim) monitors sleep patterns, movement, and indoor air quality.

Interdisciplinary team

The 5-D project involves people with various experiences and knowledge, with multifaceted skillsets such as clinicians, nurses, dental health professionals, occupational therapists, engineers, data scientists, and neuroscientists. Bettina S. Husebø is the principal investigator on the project, with extensive experience as a doctor for dementia patients in Norwegian nursing homes. Researcher Monica Patrascu coordinates the model development, Postdoctoral Researcher Kamilla Haugland-Pruitt coordinates the project, and Researcher Brice Marty provides computational programming. The PhD Candidates Anne Therese Hatle and Oda Isene, and the Research Nurse
Tanja Lukkari, are primarily focusing on data collection. New team members will join soon, as a new postdoc and a
researcher are in the process of being recruited. Additional staff are also involved in the complementary studies.

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. The study collaborates with the Bergen Red Cross Nursing Home and aims to describe changes in the activity of people with dementia at the end of life. DIPH.DEM functions as a proof-of-concept study for the 5-D project.

The ORAL.DEM study is also financed by Helse Vest. Manal Mustafa is leading this odontology part of the 5-D project, and Farzana Haque works as a PhD candidate on this project. From 2026, Hager Elabdeen joined the team as a research assistant. As people with dementia are classified as a high-risk group for the development of oral diseases, further complicating their situation, the ORAL.DEM project aims to investigate oral health in people with dementia at the end of life and to identify the best measures to enhance oral care.

The Relative Interview Study aims to talk to the family members of participants in the 5-D study. Justin Haugland-
Pruitt and Elise Førsund are conducting the interviews, while Kamilla Haugland-Pruitt and Bettina Husebø are actively recruiting relatives. Twelve interviews have already completed, and an additional 3–7 more are planned to take place in January 2026.

Impact

The findings of the 5-D project have the potential to generate critical insights aimed at optimising individualised treatment strategies for individuals living with dementia. A deeper understanding of the mechanisms, timing, and circumstances under which people with dementia enter the final phase of life will not only advance dementia care but also yield knowledge transferable to other scientific domains and disease contexts. Such insights may contribute to improving quality of life, particularly at the end of life, by enabling the development of more effective and personalised palliative care for individuals who are unable to articulate symptoms or pain. Ultimately, this work aspires to support older adults in experiencing a dignified end-of-life process within the home environment.

Education

At the participating nursing homes, we conduct regular educational sessions for the staff to build a common frame of reference and learn to use the questionnaires and the technology. Further education will be implemented based
on the results of the study.

Ethics

This study is funded by the European Research Council (ERC-2022-CoG 101088414). The 5-D study was approved by the Regional Committee for Medical Research Ethics (REK 2024/657596) and the National Ethics Committee for Medical Research (NEM 2024/116). The study is registered at clinicaltrials.gov (NCT06437132).

Current status

As per June 2026, 292 participants have been recruited for the study, and 263 participants have completed baseline measurements. 144 participants have completed their six-month follow-up measurements, and 86 participants have completed their twelve-month follow-up measurements. Comprehensive training and informational sessions have been systematically implemented across all newly established nursing homes.

Seventeen nursing homes in the municipalities of Bergen, Alver, Stad, Farsund, Bjørnafjorden, Bærum, and Voss have joined the project. The recruitment process has started in all of the nursing homes: Bergen Red Cross Nursing Home, Stiftelsen Metodisthjemmet, Stiftelsen Domkirkehjemmet in Bergen, Stiftelsen Betanien Bergen, Stiftelsen Adventistkirkens Sykehjem Nordås, Siljuslåtten sykehjem, Vetleflaten Omsorgssenter and Voss nursing home, Slettebakken Menighets Eldresenter, Listaheimen and Farsund Care Homes, Oksenøya nursing home, Luranetunet in Bjørnafjorden, Hogatunet, Seljetunet, Såta bu- og servicesenter, Lindås Bu og servicesenter , and
Manger Velferdssenter.

In addition to analysing individual symptom profiles, we identify significant interdependencies among the symptoms, which will be addressed in subsequent indepth investigations.

Communication

The 5-D team issues two 5-D Newsletters per year and hosts an annual 5-D Day.

In addition, we participate in relevant national and international meetings and conferences.