About us

The Carer's Guide has been developed in the context of the RHAPSODY research project. This project is funded by the European "Joint Program for Neurodegenerative Disease Research" (JPND) in six countries (France, Germany, Netherlands, Portugal, Sweden, United Kingdom). Researchers from these countries initially analysed the care policy and information available for people with young onset dementia and their carers in each country. At the same time, they also talked with people caring for someone affected by the condition to find out about their individual needs and their access to care. Based on this evidence and building on previous experience in supporting carers of people with dementia, the online program was put together. Its delivery in multi-media, online format was provided by specialised software developers. The RHAPSODY Carer's Guide includes seven parts:

1. What is young onset dementia?
2. A medical perspective on young onset dementia
3. Frequent problems and solutions
4. Dealing with challenging behaviour
5. Family issues
6. How to get help
7. Looking after yourself

To make the program practical, approachable and easy to follow, it includes different types of presentations that explain the information in several different ways. These include:

  • Introductions and overviews by a moderator
  • Short presentations by professionals
  • Interactive sections on optional topics
  • Real-life examples and experiences of other carers
  • Video clips, photographs and illustrations
  • Additional material providing in-depth information

The program will be tested in a pilot study involving volunteers in France, Germany and the United Kingdom. Carers who have volunteered will evaluate the usefulness of the program in terms of how practical it is to use; whether the content is comprehensive and easy to follow; and whether the information is helpful for carers. The results of the pilot study will provide important guidance for refining the program. Ultimately, it is hoped that the RHAPSODY Carer's Guide for Young Onset Dementia will be available to dementia and carer organisations across Europe.