Accepted paper:

Achieving a good death with dementia: deconstructing values at the end of life

Authors:

Natashe Lemos Dekker (University of Amsterdam)

Paper short abstract:

In this research I study the values that frame what is considered a good death in Dutch society by looking at the process of dying with dementia.

Paper long abstract:

In this research I study the values that frame what is considered a good death in Dutch society by looking at the process of dying with dementia. Even though the term good death is contested - a single death can be perceived in different ways - its use and how it is conceptualized reveals fundamental norms and values in a society. I will address how notions of a good death relate to end-of-life decision making and the provision of care for people with dementia. By questioning practices of care and decision making we come to understand the values that are attributed to the end of life with dementia. In the context of dementia, death is not an event but a process. Kaufman states that dementia "obscures the distinction between life and death" (2006: 23). In this line of thought, it seems that dementia does not fit in our cultural notions of what constitutes life and death. Not fitting these categories, people with advanced dementia can become associated with a social death, which can be perceived as a grey zone between life and death. Ascribing values to life and death has far reaching implications for end-of-life care for people with dementia and their surroundings. The question, what is good care at the end of life of people with dementia, therefore requires us to study how we conceptualize death and where we localize it.

panel P69
Designing death: fashioning ends of life and beyond