title: Living with a diagnosis of behavioural-variant frontotemporal dementia: The person's experience.
abstract: Research investigating behavioural-variant frontotemporal dementia has concentrated on identifying and quantifying people's difficulties; yet few studies have considered how people with behavioural-variant frontotemporal dementia make sense of their difficulties. Five participants were interviewed and interpretive phenomenological analysis used to analyse the data. Two superordinate themes emerged: 'Bewilderment' and 'Relationships with others'. 'Bewilderment' reflected the feelings of the participants from the start of their dementia, and was divided into two main themes (1) 'Awareness of change: What's the problem? and (2) Threats to self: This is not me. The superordinate theme, 'Relationships with others', reflected difficulties with social relationships and comprised two main themes (1) 'Family and friends: Things haven't changed… but do I say anything wrong?' and (2) Coping with threats to self: Blame others or just avoid them. The themes were discussed in relation to literature evaluating the difficulties associated with behavioural-variant frontotemporal dementia together with implications for clinical practice.
authors: Black Country Partnership NHS Foundation Trust, Penn Hospital, Wolverhampton, UK julie.griffin@bcpft.nhs.uk.
authors: Julie
authors: J
authors: Griffin
authors: Facility of Health Studies, University of Bradford, Bradford, UK.
authors: Jan R
authors: JR
authors: Oyebode
authors: Joanne
authors: J
authors: Allen
mesh_terms: D000223:Adaptation, Psychological; D005260:Female; D057180:Frontotemporal Dementia / Q000523:psychology*; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007398:Interpersonal Relations; D008297:Male; D008875:Middle Aged; D036301:Qualitative Research; D012649:Self Concept
keywords: dementia; identity; interpretative phenomenological analysis; qualitative analysis; relationships