The family experience of frontotemporal dementia: a qualitative study

Bradley, Paul (2009). The family experience of frontotemporal dementia: a qualitative study. University of Birmingham. Clin.Psy.D.

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Abstract

This volume consists of two papers, the first of which is a review of the literature that uses ‘Theory of Mind’ (ToM) tasks with people with frontal-variant frontotemporal dementia (fvFTD). All the research identified is systematically appraised in terms of the methodology and the quality of the published reports. The evidence indicates that ToM is impaired in people with fvFTD; however more robust findings were evident from research which comprehensively measured neuropsychological functioning and used established and well known ToM tests. More recent research has diversified into exploring other aspects of social cognition, such as emotional processing and empathy, and their relationships with ToM. The nominated journal for this review paper is ‘Neuropsychologia’. The second paper is a qualitative research project that explores the experiences of family members of people living with fvFTD. The research questions were: How does the development of fvFTD in a working age person affect the family experience of living with that person, and how might mental health services respond to the needs of those family members? Individual in-depth interviews were carried out with six relatives (including partners, a sibling, and an adult child), and Interpretative Phenomenological Analysis (IPA) was used to analyse the data resulting in the emergence of four main themes. The findings demonstrate how family caregivers of people with fvFTD have to contend with specific behavioural challenges and personality changes associated with the condition. The study also indicates that knowledge about fvFTD is lacking in both carers and professionals alike, causing uncertainty and long periods waiting for a diagnosis, which adds to the burden of care for these people. Services need to be developed to cater for specific individual needs and awareness needs to be raised in all health care services. The nominated journal for this research paper is ‘Dementia: The International Journal of Social Research and Practice’.

Type of Work:

Thesis (Doctorates > Clin.Psy.D.)

Award Type:

Doctorates > Clin.Psy.D.

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