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)”.

Main content
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” 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 will recruit 150 older adults aged 65 and above with dementia living in nursing homes, focusing on those receiving long-term care until the end of life. Every 6 months, clinical assessments will be conducted to evaluate oral mucosa, gingival tissue, saliva levels, and record any lesions such as caries and gingivitis. Caries assessment will follow WHO guidelines. Unstimulated saliva samples will be collected at baseline and every six months to measure salivary pH and buffer capacity, while plaque samples will be analysed using the Human Oral Microbial Identification Microarray (HOMIM). Gingival crevicular fluid (GCF) will also be collected for future analysis, ensuring a comprehensive assessment of oral health in this vulnerable population.
Impact
In the near future, we expect that this comprehensive approach not only enhances the quality of life for vulnerable individuals but also reduces 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. Researcher and dentist Manal Ibrahim Mustafa Sharafeldin is leading ORAL.DEM. Professor Kamal Babikeir Elnour Mustafa, Leader of the Center for Translational Oral Research, is also contributing, and Farzana Haque is on board as a research assistant working on the calibration process and data collection in nursing home patients with dementia. Associate Professor Ragnhild Eide Skogseth is consulted as geriatrician and will lead the development of the knowledge package. From the 5-D team, Monica Patrascu (systems scientist) will oversee the data analyses and a PhD student in odontology will also be recruited. Rune Samdal is the user representative.
Current status
Data collection started in November 2024, with 10 nursing homes lined up for participation and the potential to include more if needed. 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.