Research to Assess Policies and Strategies for Dementia in the Young
The main goal of RHAPSODY is to improve care for people with Young Onset Dementia by supporting their carers. The project aims to create and evaluate an educational, web-based, interactive e-learning programme which is tailored to the needs of this particular group of people.
The project is an EU Joint Programme Neurodegenerative Disease Research (JPND) project which includes eight partner institutions from six countries– France, Germany, the Netherlands, Portugal, Sweden and the United Kingdom. The UK contribution is being funded by the ESRC. 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.
The overall lead for RHAPSODY is Professor Alexander Kurz from the Technological University of Munich and the UK lead is Professor Heather Gage from the University of Surrey. Professor Jan Oyebode from the School of Dementia Studies, University of Bradford, contributes clinical and qualitative research expertise to the UK group.
RHAPSODY has four major aims.
- To evaluate the policy and information environment that provides the framework for the treatment and care of people with YOD and their carers in six European countries.
- To assess the specific and individual needs of this particular group.
- To use this information to design an internet-based, multimedia, interactive learning course for carers of people with YOD.
- To test this learning course in a pilot study at three sites in France, Germany and the United Kingdom, assessing feasibility, acceptance and user satisfaction.
The results of RHAPSODY will provide a basis for developing strategies to improve treatment and care for people with YOD and their carers. Information will be made available as to which services are best suited to meet the needs of this underserved group. RHAPSODY will deliver a model of a user-friendly, universally accessible and cost-effective type of healthcare intervention. The learning course will be made available to organisations working with people with dementia across Europe as a complement to existing services.
Selected modules of the learning course will also be used in the training of healthcare professionals. Thus, RHAPSODY will contribute to increasing awareness and competence while reducing stigma with regard to YOD.