'A perfect storm' or missed care? Focus group interviews with dementia care professionals on Advance Care Planning

Abstract

Background: Dementia is one of the leading causes of dependency and disability among older people and currently the seventh leading cause of death among all diseases. In recent years, healthcare research in Advance Care Planning in dementia care has received increased attention. Advance Care Planning is a discussion process conducted in anticipation of future deterioration of a person’s health condition. The purpose of the study was to investigate the views of dementia nurses and geriatricians on Advance Care Planning in dementia care. Methods: The study design is a qualitative study using semi-structured focus group interviews with dementia care professionals in a region in Western Finland. A total of seventeen dementia care professionals participated. A modified version of the Qualitative Analysis Guide of Leuven was used for the data analysis. Results: The data analysis identified one main theme and three sub-themes describing the views of dementia nurses and geriatricians on Advance Care Planning in dementia care. The main theme was the ‘perfect storm’ with sub-themes relating to the person with dementia, the care process, and the care professional. The unfavorable circumstances creating a ‘perfect storm’ are related to the nature of the illness and the associated stigma, to the unclarity in the suggested care path with inadequate guidelines for Advance Care Planning, and to the demands placed on dementia nurses and geriatricians, as well as to insufficient resources. Conclusions: Dementia nurses and geriatricians acknowledge the importance of advance directives and express a generally positive view of Advance Care Planning in dementia care. They also hold views on a number of factors which affect the conditions for conducting Advance Care Planning. The lack of Advance Care Planning in dementia care can be seen as a form of missed care caused by multiple forces coming together simultaneously.