Hidden lives and deaths: the last months of life of people with intellectual disabilities living in long-term, generic care settings in the UK

J Appl Res Intellect Disabil. 2021 Nov;34(6):1489-1498. doi: 10.1111/jar.12891. Epub 2021 May 24.


Rationale: This paper concerns mortality and needs for end-of-life care in a population of adults with ID living in generic care homes.

Methods: Various sampling strategies were used to identify a difficult to find a population of people with ID in generic care homes. Demographic and health data were obtained for 132 people with ID. This included the Surprise Question. At T2, 12 months later, data were obtained on the survival of this sample.

Findings: The average age was 68.6 years, and the majority were women (55.3%). Their health was typically rated as good or better. Responses to the Surprise Question indicated that 23.3% respondents might need EoLC. At T2, 18.0% of this population had died. The average of death was 72.2 years. The majority died within the care setting (62.9%).

Implications: The implications for end-of-life care and mortality research are discussed.

Keywords: Surprise Question; care homes; end-of-life care; mortality; older people.

MeSH terms

  • Adult
  • Aged
  • Female
  • Humans
  • Intellectual Disability*
  • Long-Term Care
  • Male
  • Terminal Care*
  • United Kingdom / epidemiology