Living with a diagnosis of frontotemporal dementia: What helps and hinders?

Abstract

Background Frontotemporal dementia (FTD) is a term used to describe a spectrum of disorders associated with changes to behaviour, affect, speech and physical symptoms. Services have developed based upon the needs of people with Alzheimer’s disease, hence, the needs of people with FTD are often unmet. The limited evidence available indicates the views of people with FTD are not heard in research exploring the perspectives of family caregivers and clinicians. Hearing the voices of people with dementia is widely acknowledged as fundamental to providing person-centred care. As such, the absence of the voices of people specifically with FTD is a cause for concern. Aim This study aims to explore the lived experience of FTD from the person’s perspective and to identify what helps and hinders people in living well with this condition. Methodology Interpretative phenomenological analysis (IPA) was selected due to its commitment to exploring how people make sense of life experiences and is a useful approach to deploy in under-researched areas. Methods Seven people with FTD took part in individual interviews. Data was collected from a total of thirteen interviews and analysed using IPA guidance. A reflective journal informed and refined the development of themes emerging from the data. Findings 2 Four themes emerged from the data: the rocky road through assessment; the changing self; in touch with reality; and keeping going. The four themes and two overarching themes of the need to hear the voices of people with FTD and the importance of them having an element of control throughout their journey emerged from the study and are represented in the framework entitled ‘the person-led framework for understanding the experience of FTD’. Conclusion This study addresses a gap in knowledge about the person’s lived experience of FTD. The study informs clinicians in relation to supporting people with FTD, involves people with FTD in decision-making, and suggests directions for future research.