The Rhapsody Project is an EU research project funded by the Joint Programme for Neurodegenerative Diseases. They are looking for volunteers to test a new online source of information and support designed for carers of people with young onset dementia.
The project forms a European collaboration across six countries (England, France, Germany, the Netherlands, Portugal and Sweden) where researchers have developed an online programme to provide information and help to carers. It will be available online 24 hours a day using a desktop or tablet computer.
We caught up with Dr Bridget Jones, a researcher for the UK arm of the Rhapsody Study to find out more.
We have developed an online programme to provide information and help with skills carers may find useful. We would like to find out whether this particular form of support, which is available online 24 hours a day using a desktop or tablet computer, is beneficial for carers.
The objective is to find out whether the online program is easy to use and helpful, and whether it can reduce the carers’ stress and burden, and increase their quality of life. Participation from Join Dementia Research volunteers will provide information that will help us to improve the program before it is used more widely. This study has been reviewed and favourably approved by the University of Surrey Ethics Committee.
Participants’ opinions are important. We are particularly interested in the opinions of those who support someone living with young onset dementia. We appreciate the insight that informal (unpaid) carers provide on the type of information that helps. We value your voice.
All participants in the study will be given access to the online program. However, the time when each person will gain access to the program will be determined by a random procedure (like flipping a coin). One half of the participants will have access to the program immediately after enrolling in the study. The other half will be given access to program after a period of 2 months.
The program itself provides important information about young onset dementia and demonstrates ways of coping that may be helpful for carers. It also includes practical information about where to get help, as well as links to relevant websites and resources. There are video clips, interactive sessions and reflective questions, as well as an online discussion forum where participants can share comments.
We are looking for 25 volunteers to test the online program and provide feedback on how helpful and easy it is to use, before it is made more widely available.
Carers who volunteer should:
– be 18 years old or older
– be the main carers for a person diagnosed with Alzheimer’s disease or frontotemporal dementia in the last 3 years, and who experienced first symptoms before the age of 65
– have access to a computer or a tablet device with an internet connection and have a basic level of internet and computer literacy.
Carers of patients with dementia caused by HIV, traumatic brain injury, Down’s syndrome, Huntington’s chorea, vascular or alcohol-related dementia are not included in this study.
All participants in the study will be given access to the online programme for 6 weeks and will be asked to provide feedback to the research team.
You can see if you are eligible for this study, as well as others around the nation, by logging into your Join Dementia Research account.
Not registered with Join Dementia Research? Why not sign up today?
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