A mixed methods study exploring organisational factors influencing the development of services for people with dementia in English hospices

Abstract

Hospices are being challenged by changing demographics in the UK population. Originating from a response to cancer, hospices have struggled to diversify. As the population ages, dementia creates a particular challenge. A report by the Alzheimer’s Society predicts that one in three of us will die with or from it (Alzheimer's Society, n.d. i) making it difficult to see how hospices can avoid adapting their organisations to respond in some way. This research aims to understand hospices from an organisational perspective, considering what might be maintaining hospices in their current form and how they are responding to the changing environment in the context of dementia. The study hopes to contribute to discourse and knowledge around hospices as organisations and the use of institutional theory in practice.
This mixed-method study takes an organisational perspective considering the hospice movement’s response to dementia and introduces theories such as organisational institutionalism and institutional work theory. The research provides a historical and interpretive analysis of the topic including a variety of literature and fieldwork collected from a survey, interviews and a focus group. The study highlights challenges of institutionalism such as legitimacy and how this impacts institutional change. Fieldwork indicated, despite significant barriers there was a real desire to support people with dementia. The study offers two models of institutionalism that might shed light on the challenges of change within the movement. The research concludes that despite some individual efforts, there is no viable model or coordinated attempt to shift the narrative of hospice care away from cancer towards dementia. The research offers some recommendations for consideration if the hospice movement wishes to respond to this population.