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

Todd, Stuart, Bernal, Jane, Worth, Rhian, Shearn, Julia, Brearley, Sarah, McCarron, Mary and Hunt, Katherine (2021) Hidden lives and deaths: the last months of life of people with intellectual disabilities living in long-term, generic care settings in the UK. Journal of Applied Research in Intellectual Disabilities, 35 (6), 1489-1498. (doi:10.1111/jar.12891).

Abstract

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.

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Contributors

Author: Katherine Hunt

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