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Digital Dementia Registry Bavaria – digiDEM Bayern

The Digital Dementia Registry Bavaria – digiDEM Bayern
An outcomes research project with the aim to improve diagnosis and care of people with dementia and their caring relatives throughout Bavaria

The number of people suffering from dementia is increasing from year to year. The increasing prevalence of dementia is accompanied by major challenges for people affected and the society in general. In order to meet those challenges, the Bavarian Ministry of Health and Care elaborated the interministerial ‘Bavarian Dementia Strategy’ in 2003. The research project ‘Digital Dementia Registry Bavaria (digiDEM)’ follows this strategy by aiming to improve diagnosis and care of people with dementia, support their relatives and track treatments over the long term throughout Bavaria. The project is run by FAU, Universitätsklinikum Erlangen and the Leading-Edge Cluster Medical Valley EMN and is being funded by the Bavarian state government as part of the funding initiative ‘BAYERN DIGITAL II’. digiDEM is conceptualized for 5 years (2019-2023) with a total funding volume of 6.2 million Euros. The funding agreement over the partial amount of 2.2 million Euros was given to the Consortium by the Bavarian Minister for Health and Care Melanie Huml on 17 December 2018.

Dementia

Dementia is an umbrella term for different neurodegenerative diseases, characterized by a loss of cognitive and everyday functions. The most common form of dementia is the Alzheimer’s disease. With 50 million people affected worldwide, dementia is a significant challenge of our times [1]. In Bavaria alone, there are currently around 240,000 people living with dementia [2]. Demographic change means that an increase of more than 300,000 can be expected by the year 2030 [3]. Tending to and caring for these people in future are major challenges, not only for the health system, but for the society in general.

Project background

digiDEM builds upon the results of the research project ‘Bavarian Dementia Survey (BayDem)’. From 2015-2018 BayDem recruited about 700 people with dementia and their caregivers and investigated the challenges of those people living in their home environment [4].

Moreover, digiDEM follows the ‘Bavarian Dementia Strategy’, developed by the Bavarian Ministry of Health and Care. The strategy consists of 10 different fields of action, including the interconnection and development of local structures, the relief of informal caregivers at home as well as basic and outcomes research [5].

Digital Dementia Registry Bavaria

Central aims of digiDEM are the establishment of a digital guide and the provision of digital services for people with dementia and their informal caregivers. Furthermore, digiDEM purposes to create a digital support platform for volunteers and to facilitate a digital participation of the Bavarian citizens.

In addition, digiDEM aims to push forward outcomes research in dementia care. The aim is to create a digital register in Bavaria that will contribute to a better understanding of the complexity and long-term progression of dementia. Thus, long-term data will be collected in all seven administrative regions (Regierungsbezirke) within Bavaria. The data will include the treatment, care and utilization of services of people with dementia as well as the caregivers’ burden. These findings will help to improve the life of people with dementia and their caregivers, particularly in the rural areas of Bavaria.

Realisation by an interdisciplinary consortium

digiDEM is a collaboration between FAU, represented by the Interdisciplinary Centre for Health Technology Assessment and Public Health (Head: Prof. Dr. Peter Kolominsky-Rabas) and the Chair of Medical Informatics (Head: Prof. Dr. Hans-Ulrich Prokosch), Universitätsklinikum Erlangen, represented by the Centre for Health Service Research (Head: Prof. Dr. Elmar Gräßel), and the Leading-Edge Cluster Medical Valley EMN (members of the board: Prof. Dr. Erich R. Reinhardt and Prof. Dr. Jürgen Schüttler).

Contact

Prof. Dr. med. Peter Kolominsky-Rabas, MBA
Interdisciplinary Center for Health Technology Assessment and Public Health (IZPH)
Friedrich-Alexander-University Erlangen-Nürnberg
Schwabachanlage 6
91054 Erlangen
Tel: +49 9131 85-35855
E-Mail: peter.kolominsky-rabas@fau.de

Literature

  1. Prince M., Wimo A., Guerchet M., Ali G., Wu Y., Prina M., World Alzheimer Report 2015 – The Global Impact of Dementia: An analysis of prevalence, incidence, cost and trends. Alzheimer’s Disease International, 2015.
  2. Bickel H., Informationsblatt 1. Die Häufigkeit von Demenzerkrankungen. Berlin, 2018. Available from: https://www.deutsche-alzheimer.de/fileadmin/alz/pdf/factsheets/infoblatt1_haeufigkeit_demenzerkrankungen_dalzg.pdf., [Accessed: 29th April 2019].
  3. Bayerisches Landesamt für Gesundheit und Lebensmittelsicherheit, Gesundheitsreport Bayern. 2/2019 – Update Demenzerkrankungen. Erlangen, 2019. Available from: https://www.lgl.bayern.de/publikationen/doc/gesundheitsreport_2_2019.pdf., [Accessed: 29th April 2019].
  4. Kolominsky-Rabas P.L., Graessel E., Chilla T., Nickel F., Marinova-Schmidt V., Kohlmann L., Dietzel N., Hess M., Cerveny N., Kratzer A., Sperr A., Bayerischer Demenz Survey (BayDem). Bericht für die Projektphase 2015–2017. München and Nürnberg, 2018. Available from: https://www.bestellen.bayern.de/application/applstarter?APPL=eshop&DIR=eshop&ACTIONxSETVAL(artdtl.htm,APGxNODENR:332959,AARTxNR:stmgp_pflege_046,AARTxNODENR:352690,USERxBODYURL:artdtl.htm,KATALOG:StMGP,AKATxNAME:StMGP,ALLE:x)=X, [Accessed: 21th January 2019].
  5. Bayerisches Staatsministerium für Gesundheit und Pflege, Bayerische Demenzstrategie. 2013. Available from: https://www.stmgp.bayern.de/wp-content/uploads/2015/10/demenzstrategie_langfassung_neu.pdf, [Accessed: 21th January 2019].