Perceptions of death among adults with intellectual disability and awareness of their own mortality

The longevity and aging process observed specifically in people with intellectual disability has been extensively studied, as has their experience of bereavement. Research concerning end of life and palliative care for this population remains limited, but is developing, notably in English-speaking countries. Not enough is known, however, about the personal relationship, which these people may have with death, the images they associate with it or how aware they are of their own ultimate end. This article deals with these issues, based on the study of 273 cases of adults with varying degrees of intellectual disability confronted with death as a result of the loss of a someone close or their developing their own life-threatening illness. Material was collected using questionnaires filled out by their professional carer-providers. 31 situations were then examined in detail and interviews conducted with the subjects, their families and carers. The results show that their perceptions of death are greater than might be expected. Nevertheless, more severe intellectual ability can induce unfinished or particular concepts of death and regardless of the level of disability, the emotional dimension can interfere with the way such events are perceived. Awareness of specific behaviors can help professionals and family members support the growing number of people with intellectual disability who must deal with bereavement or end-of-life situations.