Advancing Dementia Care in Austria: developing a Dementia Registry using a multimethod approach

• Published in: European journal of public health Vol. 34; no. Supplement_3
• Main Authors: Cartaxo, A, Herz, T, Juraszovich, B, Rappold, E
• Format: Journal Article
• Language: English
• Published: Oxford University Press 01.11.2024
• Subjects: Poster Displays
• ISSN: 1101-1262; 1464-360X
• DOI: 10.1093/eurpub/ckae144.1287

Abstract Background Austria faces an increasing demand for dementia care in an ageing population. However, a lack of representative data hampers evidence-based policy development and evaluation of care. To address this gap, the Austrian National Institute of Public Health is undertaking the task of developing the Austrian Dementia Quality Registry (ÖDQR). Methods Based on the AIHTA Good Practice Framework for Dementia Registries, the development and testing of the ÖDQR has unfolded in 4 distinct phases: 1) planning; 2) registry design (including definition of quality indicators and minimum data set, recruitment, and governance); 3) definition of data collection, sources, and management; 4) pilot testing. A steering committee of government representatives and dementia care experts was convened to oversee the project. A scientific committee provided oversight and ensured methodological rigor. Working groups of national and international dementia care experts focused on standards for diagnosis and therapy, activities of daily living and quality of life, legal aspects, and technical implementation, thus contributing to the content development of the ÖDQR. Results An initial systematic literature review informed the selection of quality indicators in the working groups. A conceptual framework of 15 descriptive and 30 quality indicators was developed. Preliminary results of pilot testing indicate feasibility and content validity. As a result, the ÖDQR will be established as a longitudinal survey-based registry, based on an instrument comprising 163 variables and emphasizing data collection across care settings. Legal and technical frameworks are being developed. Conclusions The öDQR holds the promise of informing evidence-based policy and improving the quality of dementia care in Austria. Careful planning and collaboration have laid the foundation for a data repository that will inform policy and improve care for people with dementia and their caregivers. Key messages • Dementia registries require a complex development to assure validity and adherence. • The Austrian Dementia Registry aims to establish best practice by focusing on the life situation of those affected by this condition.