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

The project RHAPSODY analyzes European health and social care systems for the underserved group of people with young onset dementia. Results will be used to build and probe an educational, interactive e-learning programme for carers.

A multidisciplinary team of investigators from academia, industry and patient and carer organisations are joining their efforts in the RHAPSODY project (Research to Assess Policies and Strategies for Dementia in the Young). While dementia is commonly viewed as a health and social problem of old age, young onset dementia is defined by symptoms occurring before the age of 65 years.

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.”

The information gathered by the experts will be used to develop an internet-based, educational and skill-building learning programme supporting people with young onset dementia and their carers. This e-learning programme will be tailored to the identified needs and pathways to care, appropriate to help family carers cope with young onset dementia and manage the associated behavioural, interpersonal, organisational and financial problems. The program will be put to the real-world test in a pilot study.

The RHAPSODY project was launched in April 2014. It is supported by the EU Joint Programme – Neurodegenerative Disease Research (JPND) and the German Federal Ministry of Education and Research (BMBF). JPND is the largest global research initiative aimed at tackling the challenge of neurodegenerative diseases. JPND aims to increase coordinated investment between participating countries in research aimed at finding causes, developing cures, and identifying appropriate ways to care for those with neurodegenerative diseases. IMC AG – as a leading expert in e-learning – will focus on the conceptual design, implementation, and delivery of the learning programme.

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