Do men and women with intellectual disabilities understand death?

BACKGROUND: Individuals with ID are often withheld information about the death of their loved ones as it has often been thought that they do not understand death or cannot grieve. This grief exacerbates the stress of individuals with ID as they often encounter secondary losses such as transitioning to a care facility. The aim of this study is to investigate men and women with ID understanding death concepts and to what extent.

METHOD: Adopting a stratified random sampling method, 156 Chinese people with ID were invited to join the study. One hundred and ten participants were interviewed using simple death related vignettes expanding upon and replicating a published study carried out in Ireland. The understanding of the five death concepts: causality, irreversibility, nonfunctionality, universality and inevitability was examined. The correlates of demographics, bereavement experiences and comprehension were explored.

RESULTS: The majority of the participants did understand concepts such as death is irreversible and that the deceased no longer function. One third of the participants understood causality and the universality of death. One fifth understood the inevitability of death. Previous bereavement experiences were correlated with higher understanding. Communication and community skills were correlated with all concepts of death except universality.

CONCLUSION: The results indicate that individuals with ID do have a partial to full understanding of the concepts of death. The culture of Hong Kong is one that considers death to be a taboo or unlucky subject. Therefore, the results mirror the the lack of understanding of universality and inevitability concepts as it is forbidden to speak of these concepts. An open and honest environment is encouraged to educate individuals with ID about death and bereavement.