title: Alzheimer's disease and the psychosocial burden for caregivers.
abstract: The majority of patients with Alzheimer's disease are cared for by their families at home. Caring for someone with Alzheimer's disease is commonly portrayed in terms of 'problematic' behaviour. This study explored the level of understanding carers have of the illness and the psychosocial impacts carers experience. Qualitative interviews were conducted with eight carers who had been looking after their relatives in community settings. Findings suggest that the carers in this study had a distinct lack of knowledge regarding Alzheimer's disease and its management. A number of psychosocial consequences of caring were identified, including: isolation; feelings of guilt; uncertainty regarding lack of knowledge; and loneliness. Carers failed to utilise available services appropriately, and thus gained little benefit from their presence. Carers perceived their experiences as 'problematic' and they suffered negative psychosocial effects due to their caring experiences. The findings suggest that carers require more information and explanation of their experiences. This would help them in their ability to cope with their spouses.
authors.affiliation: Queen's Medical Centre, Nottingham.
authors.forename: Emma
authors.initials: E
authors.lastname: Gruffydd
authors.forename: Jacqueline
authors.initials: J
authors.lastname: Randle
mesh_terms: D000223:Adaptation, Psychological; D000544:Alzheimer Disease / Q000451:nursing*; D017028:Caregivers / Q000523:psychology*; D004739:England / Q000453:epidemiology; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D012893:Sleep Wake Disorders / Q000453:epidemiology; D012944:Social Support; D013315:Stress, Psychological / Q000453:epidemiology