title: People with dementia and their relatives: personal experiences of Alzheimer's and of the provision of care.
abstract: Little is known about the experiences of people with dementia, as there has been relatively little research carried out that includes their perspectives. In the past, user perspectives on experiences of dementia and on services have mostly been solicited from family carers, rather than from people with dementia themselves. It has been suggested that these studies may lack information and insight into the experiences of people with dementia. This study aimed at eliciting the views and feelings of people in all stages of dementia, as well as those of their relatives, on care services and on experiences of dementia. Twenty-seven people with dementia from residential and day care settings were interviewed and their daily lives videotaped. Interviews were also conducted with next of kin. This article reports on findings and issues arising from the study.
authors.affiliation: School of Health & Social Sciences, The Furnival Building, The Archway Campus, Middlesex University, 10 Highgate Hill, London N19 3UA, UK.
authors.forename: N
authors.initials: N
authors.lastname: Aggarwal
authors.forename: A A
authors.initials: AA
authors.lastname: Vass
authors.forename: H A
authors.initials: HA
authors.lastname: Minardi
authors.forename: R
authors.initials: R
authors.lastname: Ward
authors.forename: C
authors.initials: C
authors.lastname: Garfield
authors.forename: B
authors.initials: B
authors.lastname: Cybyk
mesh_terms: D000223:Adaptation, Psychological; D000544:Alzheimer Disease / Q000523:psychology*; D001294:Attitude to Health; D003631:Day Care, Medical / Q000592:standards; D004739:England; D005190:Family / Q000523:psychology; D006801:Humans; D017060:Patient Satisfaction; D011787:Quality of Health Care; D011788:Quality of Life; D012112:Residential Facilities / Q000592:standards; D012650:Self Disclosure