The ORAL.DEM Study
"ORAL care at the end of life in people with DEMentia" (ORAL.DEM) is a pioneer study to assess oral health in people with dementia during the last period of life. It is funded by the Regional Health Authorities of Western Norway (Helse Vest) and is part of the European Research Council (ERC) funded larger project “Decoding Death and Dying in people with Dementia by Digital thanotyping (5-D)”.
About the research project
Caring for people with advanced dementia presents unique challenges, particularly in recognizing when they are approaching the end of life. The Lancet Commission for “The value of death (external link)” has highlighted the importance of this phase, stressing the need for timely identification to enable effective end-of-life planning and care. Despite the significance of this stage, oral health is often overlooked in dementia health care.
People with dementia frequently struggle with basic oral hygiene due to memory loss and impaired motor skills. This leads to various dental issues, such as poor oral hygiene and unhealthy dietary behavior, resulting in many oral problems, including caries and periodontal lesions. These challenges contribute to malnutrition, discomfort, and a decline in overall health. Incorporating oral health into palliative care helps researchers identify effective ways to improve patient outcomes and better understand the overall needs of people with dementia.
Aims
With the ORAL.DEM study, we aim to develop a state-of-the-art method to assess oral health symptoms in people with dementia during the last period of life. We will create an advanced method for evaluating the oral health status, detect possible microbial profile changes, and assess any imbalance in molecules involved in the inflammatory and resolution molecules that might occur.
We will work on oral health promotion by adopting the following procedures:
- Primary prevention: Preventing the oral diseases from occurrence (e.g., caries lesions and periodontal diseases) by communication with health personnel at the nursing homes regarding the challenges in providing oral care to people with dementia.
- Secondary prevention: Early detection and intervention to arrest the early lesions by examining and providing follow-up of the oral health status among the residents.
- Tertiary prevention: Referring to treatment when needed to reduce the impact of impairment, disability, and handicap due to pain.
This study is recruiting 129 older adults aged 65 years and above with dementia. Clinical assessments are conducted every six months to evaluate oral mucosa, gingival tissue, and saliva levels, and to record oral lesions, including caries and gingivitis. Caries assessments are performed in accordance with World Health Organization (WHO) guidelines. Unstimulated saliva samples are collected at baseline and at six‑month intervals to measure salivary pH and buffering capacity. In addition, dental plaque and gingival crevicular fluid (GCF) are collected and stored for future analyses. Plaque samples will be analysed using the Human Oral Microbial Identification Microarray (HOMIM). Furthermore, levels of pro‑ and anti‑inflammatory molecules in saliva and gingival crevicular fluid will be investigated among nursing home residents.
Impact
In the near future, we expect that this comprehensive approach will not only enhance the quality of life for vulnerable individuals but also reduce healthcare burdens caused by untreated oral health issues, ultimately benefiting society at large.
Bringing in dentistry expertise
SEFAS is collaborating with Haraldsplass Deaconess Hospital and the Department of Clinical Dentistry at UiB in this project. Professor and dentist Manal Mustafa is leading ORAL.DEM. Professor Kamal Babikeir Elnour Mustafa, Leader of the Center for Translational Oral Research, is also contributing. Farzana Haque has commenced her PhD studies and is actively involved in the project. She has submitted her PhD proposal and is contributing to data collection and other research activities. Hager Rahmatalla Zein Elabdeen has joined the project as a research assistant and will be involved in data collection and laboratory work. Associate Professor Ragnhild Eide Skogseth is consulted as a geriatrician and will lead the development of the knowledge package. From the 5-D team, Monica Patrascu (systems scientist) will oversee the data analyses. Rune Samdal is the user representative.
Current status
A total of 120 participants has by the end of 2025/January 2026 been enrolled at baseline across the seven participating nursing homes. The first follow‑up phase commenced in June 2025 and included 75 participants, and the second follow‑up is scheduled to begin at the end of January 2026. The preliminary results of the study were presented on the 5‑D Day to nursing home staff and collaborators.
ORAL.DEM, as part of the larger 5-D project, has been approved by the National Ethics Committee (NEM nr 2023/166). Written informed consent is obtained for every participant, ensuring anonymity and confidentiality. Participation is voluntary, and all requested information is confidential.
People involved in ORAL.DEM
- Bettina S. Husebø, MD, PhD, Professor, Head of SEFAS
- Manal I. S. Mustafa, DDS, PhD, Professor
- Farzana Haque, MSc, PhD Candidate
- Kamal B. E. Mustafa, PhD, Professor
- Ragnhild Eide Skogseth, MD, PhD, Associate Professor, geriatrician
- Monica Patrascu, PhD, Researcher
- Hager Rahmatalla Zein Elabdeen, Research Assistant
The project was initiated by the Center for Elderly and Nursing Home Medicine (SEFAS) at the University of Bergen (UiB) in collaboration with Haraldsplass Deaconess Hospital (HDH) and the Department of Clinical Dentistry (IKO) at UiB. SEFAS collaborates with Neuro-SysMed (external link), a Centre for Clinical Treatment Research on Neurological Diseases.