Sharing stories: a meta-ethnographic analysis of 12 autobiographies written by people with dementia between 1989 and 2007

Abstract

ABSTRACTPeople with dementia are finding increasingly creative and diverse ways of making their voice heard in society and one such method is through the publication of autobiographical accounts. Following set inclusion criteria, this meta-ethnographic analysis compares and contrasts the contents of 12 books written by people with dementia and published between 1989 (the year of publication of the first text) and the end of 2007 (the selected cut-off point for inclusion). Of the 12 books, three authors were published twice, five were male, eight were from the United States of America, one was Australian and all nine had a professional background. Eight of the authors had Alzheimer's disease and one had fronto-temporal dementia. The average age of the narrator was 51.5 years (age range 38–61 years). Meta-ethnographic analysis of the 12 books inductively generated five themes that linked each story and these were: (a) awareness of change; (b) experiencing loss; (c) standing up and bearing witness; (d) sustaining continuity; and (e) liberation and death. The importance of reconstructing identity appeared a pivotal process in living with the onset and progression of dementia together with maintaining key social relationships and networks.