Who cares? Contextual layers in end-of-life care for people with intellectual disability and dementia

Abstract

The complexity of the relationship between intellectual disability (ID) and dementia is increasingly acknowledged. In order to operationalize a route towards person-centred care, we introduce the hierarchy model (Pearce, 1999) as a tool to focus the attention of policy and practice on all aspects of caregiving. This tool, which is taken from the family therapy literature, enables practitioners to examine the broad systems that impact on the delivery and receipt of care. In this article, we focus on its utility in scrutinizing end-of-life and later stages of dementia by illustrating its use with three key areas in dementia care. These three areas provide some of the most challenging situations at the end stages, because of the possible treatment options, they are: nutrition, medical interventions, and the location of care provision. This model enables a focused approach to understanding how meaning is created within social interaction. The article draws out implications for practice and policy and has applications for practice internationally.