Developing a novel online psychoeducational intervention, the FTDToolkit, designed to equip carers of people living with frontotemporal dementia with skills and practical strategies to manage the behavioural symptoms experienced by the person they support.
Why is the research needed?
Frontotemporal dementia (FTD) is one of the most common forms of dementia in people under 65, and it can be particularly hard to live with and care for. Unlike other types of dementia, FTD often causes significant changes in behaviour, such as impulsivity, disinhibition, and apathy and in communication, which can be distressing and difficult to manage day to day.
Despite this, there are currently no dedicated interventions to help carers of people living with FTD manage these symptoms. Healthcare professionals (HCPs) also encounter difficulties when managing FTD symptoms effectively, especially outside of specialist centres. This research aims to fill that gap.
What are we doing?
The project aims to develop an online psychoeducational intervention, the FTDToolkit, to provide carers with practical skills and strategies for managing behavioural symptoms and communication challenges that may be present in the person living with FTD. It will also include training modules for HCPs.
To do this, we are interviewing family carers and HCPs at three stages of the study. We want to understand how behavioural and communication symptoms present in daily life and explore their experience in managing them. We are using that knowledge to develop the toolkit’s content and make sure it will be a useful and relevant resource.
In addition, we are also exploring the use of an online platform to monitor the progression of symptoms and carers’ wellbeing. We are inviting carers to complete online questionnaires at five different time points throughout the study.
How are we working with communities, services and organisations?
We are working closely with family carers of people living with FTD and HCPs throughout this research. We are involving both groups directly, through interviews at multiple stages, to make sure the content is relevant, practical, and accessible. Their input will shape the language, structure, and focus of the intervention. In addition, we are also holding PPIE meetings to gather feedback on the study methods and the FTDToolkit content.
Fourteen NHS Services are acting as PIC sites who will assist in participants’ recruitment, including Cambridgeshire and Peterborough Foundation Trust, University Hospital Southampton NHS Trust, Leeds Community Healthcare NHS Trust, Cambridge University Hospitals, Sherwood Forest Hospitals, South West Yorkshire Partnership NHS Foundation Trust, and Cornwall Partnership NHS Foundation Trust. The study has been funded by Motor Neurone Disease (MND) Association.
What will the impact and benefits of this research be?
This research has the potential to make a real difference to the lives of family carers supporting someone with FTD. By developing the FTDToolkit, we aim to provide carers with better knowledge, skills, and confidence to manage symptoms in everyday life. This could help reduce carer burden and improve their wellbeing.
In the longer term, the online monitoring platform could also provide a valuable tool for tracking how FTD progresses over time, helping both carers and HCPs to better understand and respond to the condition.
What do we have planned for knowledge mobilisation and implementation?
We plan to present our work to clinical and academic audiences, such as in conferences, seminars and symposiums, and to publish findings in peer reviewed journals. We will also share our work through avenues where family carers might be present, such as carers’ support groups, so that those most affected by FTD can benefit directly from findings.
Related papers, outputs and resources
To date, we have presented the FTDToolkit study at a number of conferences, including the Allied Healthcare Professionals Forum in ALS/MND. We plan to continue sharing our findings at international conferences, including the International Conference on FTD in October 2026 and the International Symposium in ALS/MND in December 2026.
Who is involved?
- Chief Investigator: Professor Eneida Mioshi, University of East Anglia
- Dr Polly Trucco, University of East Anglia
- Dr Tamara Backhouse, University of East Anglia
- Dr Mizanur Khondoker, University of East Anglia
Get in contact
Email the project team at Ftdtoolkit.study@uea.ac.uk.
