This study aims to develop a novel online psychoeducational intervention, the FTDToolkit, to support carers of people living with frontotemporal dementia with skills and practical strategies for the management of behavioural symptoms present in the person they care for.
Background
Frontotemporal dementia (FTD) is a leading cause of early onset dementia in individuals under 65, initially presenting with changes in behaviour, language, and executive functions. For carers, managing behavioural symptoms in FTD can be particularly challenging. These symptoms often include changes in the person living with FTD’s social behaviour, such as presence of disinhibition, impulsivity and rash actions and apathy among others. These behavioural changes contribute significantly to high levels of carer burden, distress, and negative mental health outcomes.
Healthcare professionals (HCPs) also face difficulties when managing FTD due to its various subtypes, which can be hard to identify outside of specialized centres. Furthermore, there is limited evidence on effective care management, and the progression of the disease is less well defined compared to other more common forms of dementia.
Currently, there are no interventions available that comprehensively support carers of people living with FTD, and FTD with additional motor symptoms (FTD-Motor Neurone Disease).
Project Aims
The project has two main aims:
- to evaluate the use of an online platform to monitor symptoms and disease progression in FTD, as well as tracking psychological health and caregiving skills of carers.
- to develop a novel online psychoeducational intervention, the FTDToolkit, aimed at supporting carers of people with FTD.
Project Activity
- For aim 1, we will explore the feasibility of monitoring disease symptoms and carers’ wellbeing through an online, bespoke online dashboard platform. Carers will be invited to complete a set of questionnaires at 5 different time point about their own wellbeing and symptoms from the person they care for.
- For aim 2, we will conduct interviews with carers and HCPs to explore 1) understanding of behavioural symptoms from carers’ perspectives (for example, how behavioural symptoms are occurring in daily life, how carers experience and manage them) and HCPs’ management perspectives, and 2) gather input and feedback of the potential content, contextual aspects and language for the FTDToolkit intervention in preparation for educational modules in the FTDToolkit platform. Interviews will be conducted at 3 different stages of the study progress.
Anticipated or actual outputs
The FTDToolkit intervention has the potential to upskill carers of people diagnosed with FTD, supporting in the daily management of the person living with FTD and improving carers’ wellbeing and patient care.
Who is involved?
- Prof Eneida Mioshi (UEA)* Chief Investigator
- Dr Ana Paula Trucco
- Dr Tamara Backhouse
- Dr Mizanur Khondoker
Contact: e.mioshi@uea.ac.uk
