title: Evaluation of an information booklet for caregivers of people with dementia: an Australian perspective.
abstract: The need for improved communication around end-of-life issues has been identified in cancer care. However, caregivers assisting those with dementia have been given scant attention. This study investigated the application of a new dementia information booklet for family caregivers, accessing those that were both community-based and linked to a residential aged-care facility through the distribution of 672 information booklets. This occurred via 14 dementia advisory services and 48 residential aged-care facilities throughout New South Wales, Australia. A total of 233 carers (33%) completed the booklet questionnaire evaluation. The descriptive statistics indicated that most carers found the booklet useful and thought that the booklet should be freely available to them. Almost half of the carers said that they wanted to receive the information at the time of, or soon after, the diagnosis of dementia. Only a small group of respondents considered the information to be confronting. The reported anxiety was thought to be part of a larger issue of dementia education and dealing with loss and not specifically related to the booklet itself.
authors.affiliation: School of Nursing and Midwifery, College of Health and Science, University of Western Sydney, Sydney, New South Wales, Australia. e.chang@uws.edu.au
authors.forename: Esther
authors.initials: E
authors.lastname: Chang
authors.forename: Sally
authors.initials: S
authors.lastname: Easterbrook
authors.forename: Karen
authors.initials: K
authors.lastname: Hancock
authors.forename: Amanda
authors.initials: A
authors.lastname: Johnson
authors.forename: Patricia
authors.initials: P
authors.lastname: Davidson
mesh_terms: D000544:Alzheimer Disease / Q000175:diagnosis / Q000628:therapy; D017028:Caregivers / Q000193:education*; D054626:Consumer Health Information / Q000379:methods; D003704:Dementia / Q000175:diagnosis / Q000628:therapy*; D005190:Family; D005246:Feedback; D005260:Female; D006266:Health Education / Q000379:methods*; D006801:Humans; D008297:Male; D009517:New South Wales; D010174:Pamphlets; D011795:Surveys and Questionnaires