Concept of death and perceptions of bereavement in adults with intellectual disabilities

Bereavement is potentially a time of disruption and emotional distress. For individuals with an intellectual disability (ID), a limited understanding of the concept of death may exacerbate this distress. The aim of the present study was to investigate how individuals with ID understand and explain death and make sense of life without the deceased.

Thirty-four people with ID were interviewed using simple vignettes describing death-related incidents. Participants were asked about the causes of death, the status of the body after death and whether all living things die. In addition, participants were asked about reactions to death and for their views on post-bereavement support.

Nearly one quarter of participants had a full understanding and over two-thirds a partial understanding of the concept of death. Death comprehension was positively correlated with cognitive ability and adaptive functioning. While cause of death was predominantly associated with illness and old age, participants viewed death as final and understood that all living things die. The role of religious beliefs was also found to be important for many participants.

The results support earlier findings that suggest people with ID have only a partial understanding of the concept of death leaving them vulnerable to factually incorrect thoughts. The study highlights the considerable scope for making sense of death using religious and spiritual themes and emphasises the need for teaching individuals biological explanations of the life cycle. The results also provide some insight into the views of individuals with ID for carers involved in providing post-bereavement support.