‘If and when?’ : the beliefs and experiences of community living staff in supporting older people with intellectual disability to know about dying

Background: The aim of this study was to explore the way in which community living staff engaged with people with intellectual disability (ID) about dying and death. Method: Guided by grounded theory methodology, focus groups and individual interviews were conducted with staff who had either no experience with client death, experience of a client sudden death, or a client death experience which was pre-dated by a period of end-of-life care. Results: While in principle, staff unanimously supported the belief that people with ID should know about dying, there was limited in-practice engagement with clients about the topic. Engagement varied according to staff experience, client capacity to understand and the nature of the ‘opportunity’ to engage. Four ‘opportunities’ were identified: ‘when family die’, ‘incidental opportunities’, ‘when clients live with someone who is dying’ and ‘when a client is dying’. Despite limited engagement by staff, people with ID are regularly exposed to dying and death. Conclusions: People with ID have a fundamental right to know about dying and death. Sophisticated staff skills are required to ensure that people with ID can meaningfully engage with end-of-life issues as opportunities arise