Knowing, planning for and fearing death: Do adults with intellectual disability and disability staff differ?

•Adults with ID understood less about the concept of death than disability staff without ID.•Adults with ID understood less and were less self-determined about end-of-life planning.•Adults with ID reported more fear of death than disability staff without ID.•We demonstrated the feasibility of assessing end-of-life planning and fear-of-death.•Future research should develop and evaluate interventions to increase understanding.

BackgroundAdults with intellectual disability (ID) are thought to understand less about death than the general population but there is no available research demonstrating this. Further, the detail of any possible differences in understanding is unknown.MethodsWe compared the responses of 39 adults with mild or moderate ID and 40 disability staff (representing the general population) on (a) understanding the concept of death, (b) knowledge of and self-determination about end-of-life planning, and (c) fear-of-death.ResultsWe found that adults with ID had a significantly poorer understanding of the concept of death, knew much less about and were less self-determined about end-of-life planning, but reported greater fear-of-death.ConclusionsWe demonstrated, for the first time, the feasibility of assessing end-of-life planning and fear-of-death among adults with ID. The poorer understanding and lower levels of self-determination we found suggest that future research should develop and evaluate interventions to increase understanding and self-determination.