Welcome to the FTDToolkit
A novel online platform to monitor symptom progression in Frontotemporal Dementia and carers’ wellbeing
Understanding progression of symptoms in frontotemporal dementia while supporting carers’ wellbeing and skills
FTDToolkit is an online research platform
It has been developed to:
Monitor the progression of symptoms in frontotemporal dementia (FTD) over time
This will allow us to gain valuable insights into the progression of FTD by regularly tracking symptom changes and support services to monitor and anticipate care needs in future.
Track carers’ skills in managing FTD symptoms
By identifying carers’ evolving skills and abilities we would be able to recognise strengths and address areas for improvement in caregiving
Investigate carers’ wellbeing throughout the progression of the disease
The understanding carers’ psychological and emotional health will allow us to better support their wellbeing during the caregiving journey
The data gathered will help us gain valuable information about disease progression and carers’ needs. This will support the creation of a comprehensive online intervention tailored to help carers navigate the challenges of FTD.
In future, this intervention has the potential to upskill carers of people diagnosed with FTD, by building an online toolkit with strategies and practical skills for managing daily care. This will contribute to enhance carers’ wellbeing and improve care for people living with FTD.
FTD symptoms affect the ability to perform daily activities independently and affect social behaviour.
For carers, FTD symptoms are difficult to manage and contribute to high levels of carer burden, distress and negative impact on their wellbeing.
FTDToolkit: Advancing FTD Care
A collaborative platform for carers and researchers
Carers
Carers, such as family members and close friends will be invited to answer questions about their wellbeing, FTD symptoms on the person they care for and how they manage these symptoms
Researchers
Will manage and monitor the FTDToolkit research study in the background, ensuring valuable insights are gathered and used to inform clinical services
Information
The information collected will help us to develop an online intervention to better support carers
Frequently Asked Questions
How do I get involved in this research study?
If you would like to participate in this study, or would like more information, please contact us at: ftdtoolkit.study@uea.ac.uk or leave a message in the contact form.
Is this study for the person living with FTD, or the carer, or both?
The FTDToolkit has been designed specifically for carers. Only the carer can be recruited to the study but participation in the study will, in future, also benefit the person living with FTD.
Can any carer of FTD take part?
Family, relatives or close friends who identify themselves as carers of people living with FTD are invited to join the study. Carers must be aged 18 years old or over and be able to read in English (with or without support)
What is the plan for the dissemination of the study results?
We aim to hold diverse events for health and social care services at the end of the project to share our findings. We will invite people living with FTD and their carers, healthcare professionals and researchers. We also aim to publish results in scientific papers and present them in national and international symposiums, conferences and workshops.
Meet our Research Team
Eneida Mioshi
Lead Investigator, UEA
Tamara Backhouse
Co-investigator, UEA
Mizanur Khondoker
Co-investigator, UEA
Polly Trucco
Co-investigator, UEAFunded by
Contact
Get in touch
Location:
University of East Anglia
Email:
ftdtoolkit.study@uea.ac.uk