RHAPSODY: European research project aims at improving care for people with young onset dementia

European research project aims at improving care for people with young onset dementia  

RHAPSODY – research for a better life for young people with dementia

Berlin, Munich, 14 August 2014. People who are affected by dementia at a young age (before the age of 65) – and their families are heavily burdened and currently underserved. Therefore an international, multidisciplinary team of investigators from academia, industry and patient and carer organisations are joining their efforts in the recently launched RHAPSODY project (Research to Assess Policies and Strategies for Dementia in the Young).

The researchers will analyse how health and social care systems and infrastructures in 6 European countries (France, Germany, The Netherlands, Portugal, Sweden, and United Kingdom) affect the access to service and care for people with young onset dementia. RHAPSODY will also assess the individual needs of patients and carers and how these are met in the different health and social care environments. The information gathered will be used to develop an internet-based learning programme supporting people with young onset dementia and their carers. The program will be put to the real-world test in a pilot study.

Professor Alexander Kurz, project coordinator, mentions: “When dementia strikes at a young age it is associated with specific and particularly severe problems for patients, family carers, and healthcare professionals. Young onset dementia has a profound impact on marital relationships and family structures, often involving children. Typically it leads to premature retirement and reduced family income and puts a heavy burden on carers. Nevertheless interventions addressing the specific needs and problems of these people and their carers are currently only available at very few research centres in Europe. Access to such specialist services is usually limited due to geographical as well as time- and mobility-related barriers. Therefore I greatly appreciate the unique opportunity of working together with a group of outstanding colleagues on this project.”

RHAPSODY was launched in April 2014. It is supported by the EU Joint Programme – Neurodegenerative Disease Research (JPND).

For more information about RHAPSODY, please visit our website: www.rhapsody-project.eu. 

Background information:

RHAPSODY Project Partners

  • Assistance Publique - Hôpitaux de Paris & Université Pierre et Marie Curie, France, main investigator: Bruno Dubois MD
  • Deutsche Alzheimer Gesellschaft e.V., Germany, main investigator: Sabine Jansen
  • Information Multimedia Communication AG, Germany, main investigator: Michael Schmidt
  • Karolinska Institutet, Sweden, main investigator: Caroline Graff MD
  • Maastricht University, The Netherlands, main investigator: Marjolein de Vugt PhD
  • Technische Universität München, Germany, main investigator: Alexander Kurz MD
  • University of Lisbon, Portugal, main investigator: Alexandre de Mendoça MD
  • University of Surrey, United Kingdom, main investigator: Heather Gage PhD

RHAPSODY is an EU Joint Programme - Neurodegenerative Disease Research (JPND) project. The project is supported through the following funding organisations under the aegis of JPND: France, The French National Research Agency (ANR); Germany, Federal Ministry of Education and Research (BMBF); Netherlands, The Netherlands Organization for Health Research and Development (ZonMW); Portugal, Fundação para a Ciência e a Technologia (FCT); Sweden, Swedish Research Council (SRC); United Kingdom, Economic and Social Research Council (ESRC). www.jpnd.eu

Contact                 

Deutsche Alzheimer Gesellschaft e.V. Selbsthilfe Demenz
Susanna Saxl        
Friedrichstr. 236, 10969 Berlin, Germany          
Phone: +49-30-259379512, Email: susanna.saxl@deutsche-alzheimer.de

Technische Universität München
Department of Psychiatry              
Katrina Milecka 
Ismaninger Str. 22, 81675 München, Germany    
Email: Katrina.Milecka@lrz.tu-muenchen.de

www.rhapsody-project.eu

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