Life story templates in dementia care: Ambiguous direction and purpose

Abstract

Background The use of life stories in dementia care has been described as a way of seeing every person as an individual, looking beyond their dementia. Life stories have become synonymous with high-quality care, while in Sweden their mere existence in dementia care settings is taken to indicate quality in national comparisons. Such life stories are often standardised, generated by a family member answering predetermined questions in a template. Aim and methods Using a constructionist approach, this study will (1) chart what versions of a person’s life story the templates produce, and (2) establish the intended purpose of such life stories, as communicated by the templates. This study departs from the assumption that life story templates communicate something about the conceptions of people living with dementia. The thematic analysis used data comprising 30 blank templates, totalling about 1,700 questions. Findings The life story templates were found to generate two very different versions of the individual: (1) a person before symptoms of dementia or (2) a patient with dementia. We also found contradictions about what information should be included, whose life story it was, and the intended use. Discussion Despite strong pressure on dementia care providers to collect life stories from residents, the life story templates they use are without clear direction, ideology, or purpose. The lack of direction is key given that life stories can be considered actants that shape assumptions about people with dementia and construct realities in dementia care settings. We highlight the need to develop ethical guidelines for life story template design, matched with guidelines for their intended use.