Talking about dying with people with ID who have experienced a bereavement: a UK survey of support staff

Aim: To investigate the extent to which people with ID who have experienced a bereavement are informed about it.
Method: Support staff in supported living and residential settings completed an online survey (n = 724, 64% response rate), supporting over 6,000 people with ID across the UK. Those answering “yes” to the question whether any of their clients had experienced a bereavement during the past 12 months (n = 693) were asked further questions about this.
Results: In 33% of cases, the person with ID was not told that the person was dying. Most respondents recognised the benefits in preparing a person with ID for the death of a significant other in their life. Almost two third of people were told of the eventual death within 24 hours (66.3%) and were involved in the subsequent funeral (64.5%). Most reported that they felt confident in dealing with the bereavement experiences of people with ID.
Conclusion: The data suggest that there has been a major shift in practice concerning the bereavement experiences of people with ID. Most were told beforehand that a significant other would die soon, informed about the death soon after it occurred and participating in grief rituals.