The DemVest study - Dementia Study in Western Norway, commenced in 2005 with the primary aim of characterizing the diagnostic, clinical and biomarker features of people with newly diagnosed dementia and describing the course and clinical impact on patients, families and society during the entire disease course until death, followed by a neuropathological examination. The study has had impact in terms of increased awareness of key symptoms among clinicians, patients, and caregivers, characterized the societal impact, and catalysing clinical trials for effective treatment.
Between 2005 to 2013, a total of 266 persons with mild dementia and a carer were included. After a comprehensive clinical and biomarker assessment at baseline, they were followed annually with clinical assessments until death, including after nursing home admission, with very low withdrawal rate. A particular focus was on dementia with Lewy bodies, DLB, which was under-diagnosed, under-treated and under-researched. Importantly, the high accuracy of clinic-pathologic diagnosis of DLB and AD underlines the quality of the research and the validity of the findings. Due to the wealth and quality of data collected, the study still serves as a valuable source for research publication. Additionally, the study explores the challenges faced by caregivers of dementia patients, linking sleep disturbances in patients to increased stress in caregivers. Caregivers of individuals with DLB are found to have a higher risk of developing mental health issues compared to those caring for individuals with Alzheimer's disease.
This was the first study of DLB in Norway, and has lead to Norway being one of the most active countries in the world for DLB research. For example, the European DLB Consortium, the world’s largest DLB network and database, is lead and coordinated by SESAM. SESAM researchers where instrumental in establishing the ISTAART DLB Professional Interest Area, including the Global Working group, with the aim of disseminating awareness of DLB globally. The DemVest study team is highly collaborative both regionally, nationally and internationally, and has contributed with genetic data to the large and successful Norwegian DemGene study, one of the largest genetic consortia worldwide, as well as to international DLB genetic networks.