Do men and women with intellectual disabilities understand death? An international perspective.

What is it about?

The aim of this study is to investigate the extent to which men and women with ID understand basic death concepts as it has often been thought that Individuals with intellectual disabilities (ID) do not understand death or cannot grieve. Thus, information about the death of a loved one is often withheld exacerbating their personal grief and adding to the stress of coping with secondary losses such as transitioning to alternative living arrangements. 110 Chinese people with intellectual disabilities were interviewed using simple death related vignettes expanding upon and replicating McEvoy, MacHale & Tierney's (2011) study. The understanding of five basic death concepts: causality, irreversibility, non-functionality, universality and inevitability were examined and the correlates of personal demographics, bereavement experiences and functional ability explored. It was found that the men and women interviewed had an incomplete or patchy understanding of death, thus leaving them at risk of confusion and post bereavement anxiety as to what might have happened to their loved one. While the majority of the participants understood that death is irreversible and that the body of the deceased no longer functions only a third understood the causes and the universality of death. And only a fifth understood that was all death is inevitable. Previous bereavement experiences were correlated with higher levels of understanding and communication and community skills were positively correlated with all sub concepts except universality. The results indicate that individuals with ID do have a partial to full understanding of the concept of death.

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Why is it important?

The culture of Hong Kong is one that considers death to be a taboo or unlucky subject. Therefore, participants lack of understanding mirrors the absence of discussion of universality and inevitability as it is forbidden to speak of these concepts. It is suggested that an open and honest environment should be encouraged so as to educate individuals with ID about death and bereavement.