Concept of death and perceptions of bereavement in adults with intellectual disabilities.
Expect partial death understanding in adults with ID, blend biological facts with their beliefs, and pass behavioral cues to medical staff to improve end-of-life care.
01Research in Context
What this study did
Rojahn et al. (2012) talked with adults who have intellectual disabilities about death. They used open interviews and picture cards to see what the adults understood.
The team asked about biological facts, feelings, and religious ideas linked to dying. They wanted to map how well each person grasped the concept.
What they found
Most adults had only a partial picture of death. Some knew bodies stop working but thought people could come back.
Understanding was stronger when the person had higher daily living scores. Religious beliefs often mixed with, or replaced, biological facts.
How this fits with other research
Pickard et al. (2022) later showed adults with ID can reliably answer adapted self-report health tools. Their work updates the target study by proving you can move beyond vignettes and still get valid data.
Bouck et al. (2016) flipped the lens: they asked physicians how they spot impending death in the same group. Doctors said they watch for behavior and appetite changes, not lab numbers. Together the two papers show a gap—patients partly understand, and clinicians read non-verbal cues to decide when death is near.
Heald et al. (2020) widened the view with registry data. Older cancer patients with ID received half the specialist visits and died at home more often. The partial death concept found by J et al. may help explain why families avoid hospital admissions—staff and families struggle to share clear end-of-life plans.
Why it matters
When you support an adult with ID through loss, start by checking what they already believe. Use simple language, pictures, or social stories to fill gaps. Share your observations with medical staff early; behavioral cues matter more than charts. Finally, advocate for inclusive research—Katherine et al. proved adults can self-report when we adapt the method.
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02At a glance
03Original abstract
BACKGROUND: Bereavement is potentially a time of disruption and emotional distress. For individuals with an intellectual disability (ID), a limited understanding of the concept of death may exacerbate this distress. The aim of the present study was to investigate how individuals with ID understand and explain death and make sense of life without the deceased. METHOD: Thirty-four people with ID were interviewed using simple vignettes describing death-related incidents. Participants were asked about the causes of death, the status of the body after death and whether all living things die. In addition, participants were asked about reactions to death and for their views on post-bereavement support. RESULTS: Nearly one quarter of participants had a full understanding and over two-thirds a partial understanding of the concept of death. Death comprehension was positively correlated with cognitive ability and adaptive functioning. While cause of death was predominantly associated with illness and old age, participants viewed death as final and understood that all living things die. The role of religious beliefs was also found to be important for many participants. CONCLUSIONS: The results support earlier findings that suggest people with ID have only a partial understanding of the concept of death leaving them vulnerable to factually incorrect thoughts. The study highlights the considerable scope for making sense of death using religious and spiritual themes and emphasises the need for teaching individuals biological explanations of the life cycle. The results also provide some insight into the views of individuals with ID for carers involved in providing post-bereavement support.
Journal of intellectual disability research : JIDR, 2012 · doi:10.1111/j.1365-2788.2011.01456.x