Persons with intellectual disability (ID) are often not told about the death of a loved one as it is assumed that they would not be able to understand the concept of death. This can be an issues especially when a parent  of a person with intellectual disability dies as the person not only loses their parent without explanation but often also has a change in living situation (such as being placed in a facility). The researchers of this study interviewed 110 Chinese adults with intellectual disability (80% with moderate ID, 15% mild, 2.5% severe) for their understanding of the concept of death and subconcepts of death (non-functional, causal, universal, irreversible, and inevitable). Of the interviewees, 12.7% had a full understanding of death including the subconcepts and 12.7% had no concept of death. Of the subcomponents, only 25% understood the concept of irreversibility while 65% understood inevitability. In addition, about half of participants had experienced bereavement before and this was associated with a higher understanding of death despite level of ID. Finally, this study compared their results to other studies from different countries- full understanding of death was a similar percentage but the subcomponents differed which may be related to cultural differences.

Discussing death is never easy, but even more complex in persons with intellectual disability. The idea of “subconcepts” that help humans understand death can be very useful in this population. By understanding which subconcepts a person with ID understands, one could tailor the way the topic of death is discussed. I believe this same method of breaking down a topic into subconcepts can be useful in discussing complex issues with persons with ID (such as bullying and sexual health). In addition, this study add to prior literature that persons with ID do understand death and that is not a reason to avoid this topic.
Kristie Malik, MD
Complex Care, Children’s Hospital at Montefiore
Chow, AYM, et al. Do men and women with intellectual disabilities understand death? J Intellect Disabil Res. 2017 Oct 18