Developing and testing a new platform to support carers of people affected by FTD and MND-FTD.
Principal Investigator: Professor Eneida Mioshi
Lead Institution: University of East Anglia
MND Association Funding: £239,979
Funding dates: October 2024 - September 2027
About the project
Some people with MND may also experience changes in their personality, thinking, language and behaviour. These changes might be symptoms of another condition called Frontotemporal Dementia (FTD) which can occur alongside MND. Some people who have both conditions are diagnosed with MND first and some are diagnosed with FTD first, depending on which order symptoms appear. For people who are diagnosed with FTD before MND, there is a lack of standardised support for the person with the disease and their families and carers. This project aims to develop a platform for carers of people affected by FTD, called the FTDToolkit, to provide better support for carers of people with FTD or MND-FTD. The researchers will test the platform with carers of people with FTD or MND-FTD to determine how useful they find it. The platform will also be tested to see whether it might be a good way to monitor symptoms and progression over time
What could this mean for MND research?
This platform could help to improve the support that carers for people with FTD and MND-FTD currently receive and ensure that everyone across the country has support available to them. It could also reveal new ways to measure disease progression and changes in symptoms over time which may be useful for both carers and clinicians when planning future care. This project could provide the evidence needed to take the platform to clinical trials to test it further and determine if it is an effective form of support.
Resources
Project code: 2312-794