Professor of intellectual disability research, Stuart Todd and colleagues published their latest research: Hidden lives and deaths: the last months of life of people with intellectual disabilities living in long-term, generic care settings in the UK

The study published in the Journal of Applied Research in Intellectual Disabilities described mortality and needs for end-of-life care in a population of adults with intellectual disabilities living in generic care homes.

Methods

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

Key findings

Results shows that 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%).

Read more about the study including the implications for end-of-life care and mortality research here

About the lead author:

Stuart Todd: Stuart is a Professor in Intellectual Disability research at the University of South Wales. His research has been based on Welsh, UK and European collaborations. His research interests span across the lives and experiences of people with intellectual disabilities and their families, including care at end of life.

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