FTDToolkit
Research type
Research Study
Full title
Understanding progression of symptoms in frontotemporal dementia while supporting carers' wellbeing and skills: the FTDToolkit
IRAS ID
351260
Contact name
Eneida Mioshi
Contact email
Sponsor organisation
University of East Anglia
Duration of Study in the UK
2 years, 6 months, 30 days
Research summary
Frontotemporal dementia (FTD) is a progressive neurodegenerative disorder that leads to significant changes in behaviour, language and executive functions. These symptoms greatly affect one's ability to carry out daily activities independently. For carers, managing FTD symptoms can be particularly challenging, often impacting in their general wellbeing and quality of life. Healthcare professionals (HCPs) also face difficulties in diagnosing and treating FTD due to its various subtypes, which complicates care and support. Currently, there is limited guidance on how best support FTD carers and patients, especially outside specialised centres.
To address this gap, this research project aims to develop an online intervention called the FTDToolkit. This platform will support carers monitor and manage FTD symptoms offering two main features: a dashboard for tracking patient symptoms and carer wellbeing, and a series of psychoeducational modules tailored to specific challenges faced by FTD carers.
The project has two main aims:
1) Testing an online platform – the dashboard to monitor patient symptoms and carer wellbeing in FTD: carers will use the platform to complete online questionnaires about the patient’s symptoms and their own wellbeing. This will help track disease progression. By monitoring patient’s symptoms and carer’s wellbeing, HCPs may benefit from timely interventions or referrals, supporting families and professionals.
2) Developing the FTDToolkit psychoeducational intervention – the FTDToolkit intervention: adaptation and development. We will gather input and feedback from carers and HCPs through interviews to create educational modules focused on managing FTD symptoms and discuss the platform’s content and format for user friendliness.REC name
South West - Frenchay Research Ethics Committee
REC reference
25/SW/0029
Date of REC Opinion
29 Apr 2025
REC opinion
Further Information Favourable Opinion