What is talked about? Community living staff experiences of talking with older people with intellectual disability about dying and death.
Community staff avoid death talk with adults with ID—script and rehearse short, clear scripts to change that now.
01Research in Context
What this study did
Whitehouse et al. (2014) asked community staff what they actually say about dying to older adults with intellectual disability.
They recorded and studied real staff talk. No training was given. The goal was to see how death comes up in everyday care.
What they found
Staff rarely started the topic. When death came up, they used soft words like 'gone' or 'asleep.' Clear facts were seldom given.
Because of this, clients had only patchy ideas about what death means.
How this fits with other research
One year earlier the same team (M et al., 2013) showed staff believe clients have the right to know. Yet this 2014 paper shows staff still avoid the talk. Belief and action do not match.
Taylor et al. (2017) later found that adults with ID who understand how body parts keep us alive also grasp death better. This gives staff a concrete first step: teach body basics before end-of-life words.
Subramaniam et al. (2023) show staff also struggle with close emotional topics like attachment. Together these studies paint a picture: staff discomfort, not client ability, is the main barrier.
Why it matters
You can close the gap today. Script two short, plain sentences about death. Rehearse them with a co-worker. Use them the next time a client asks where a dead pet or relative went. Over time these tiny moments build real understanding and reduce end-of-life fear.
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02At a glance
03Original abstract
BACKGROUND: The aim of this study was to explore what community living staff talked about and did with people with intellectual disability (ID) to assist them to understand dying and death. METHOD: Guided by grounded theory methodology, focus groups and one-to-one interviews were conducted with 22 staff who had talked about any topic relating to dying and death with their clients. RESULTS: There was little evidence that staff talked with, or did things with clients to assist understanding of the end of life, both prior to and after a death. Prior to death staff assisted clients in a limited way to understand about determining wishes in preparation for death, and what dying looks like by observance of its passage. Following a death staff offered limited assistance to clients to understand the immutability of death, and how the dead can be honoured with ritual, and remembered. CONCLUSIONS: The findings have implications for why people with ID have only partial understanding of the end of life, the staff skills required to support clients' understanding, and when conversations about the end of life should occur.
Journal of intellectual disability research : JIDR, 2014 · doi:10.1111/jir.12065