Digital Dementia Registry Bavaria—digiDEM Bayern: study protocol for a multicentre, prospective, longitudinal register study

• Published in: BMJ open 2021-02, Vol.11 (2), p.e043473-e043473
• Main Authors: Dietzel, Nikolas, Kürten, Lara, Karrer, Linda, Reichold, Michael, Köhler, Laura, Nagel, Andreas, Chmelirsch, Christina, Seebahn, Kathrin, Hladik, Markus, Meuer, Sebastian, Kirchner, Anna, Holm, Kristina, Selau, Marina, Wendel, Marco, Trinkwalter, Jörg, Prokosch, Hans-Ulrich, Graessel, Elmar, Kolominsky-Rabas, Peter L
• Format: Article
• Language: English
• Subjects: Access to information; Activities of Daily Living; Caregivers; Clinical decision making; Cognitive ability; Costs; Data collection; Decision making; Dementia; Dementia - epidemiology; Disease; Empowerment; Health services; Humans; Land area; Medical diagnosis; Multicenter Studies as Topic; Neurology; Prospective Studies; Public health; Quality of Life; Registries; Rural areas
• ISSN: 2044-6055; 2044-6055
• DOI: 10.1136/bmjopen-2020-043473

IntroductionDementia is one of the most relevant widespread diseases, with a prevalence of currently 50 million people with dementia worldwide. The care of people with dementia will be one of the major challenges for healthcare systems worldwide. Digitalisation offers new possibilities to improve both dementia healthcare and health outcomes research as a fundament for national healthcare planning. The ‘Digital Dementia Registry Bavaria—digiDEM Bayern’ aims to improve the understanding of the complexity and long-term progression of dementia and the current care situation in Bavaria. Moreover, by offering digital services, digiDEM will actively contribute to improving the care situation in Bavaria.Methods and analysisdigiDEM will recruit people with dementia and their family caregivers in all administrative regions of Bavaria. All participants will undergo dementia screening prior to study inclusion in order to identify people with mild cognitive impairment and mild-to-moderate dementia. Participants will be followed up over a period of three years. Sociodemographic data, type of dementia, symptoms, diagnosis, cognitive trajectories, activities of daily living, behavioural and psychological symptoms, falls, resource utilisation, caregiver burden, quality of life, needs of people with dementia and their caregivers, mobility, use of media and sources of information will be assessed. The project will implement a digital web-based platform for data collection. Data will be collected by means of standardised online or face-to-face interviews.Ethics and disseminationThe study obtained ethical approval from the Ethics Committee of the Medical Faculty of Friedrich-Alexander-University Erlangen-Nürnberg (FAU) (application number: 253_20 B). Findings will be used for evidence-based decision-making for health decision-makers in order to optimise dementia healthcare in the state of Bavaria. Specific analyses will be conducted for the participating research partners. Results of the study will be published in peer-reviewed journals.