Hidden lives and deaths: people with ID living in generic care settings

Aim: To investigate the nature of death of people with ID living in non‐ID adult care settings.
Method: 70 non ID care settings in the UK participated in the study. Within this population, 162 people (8.8%) were reported to have ID. Demographic and health data on those people with ID were obtained. This was repeated within 12 months and data also obtained on deaths that occurred within this time period.
Results: Preliminary analysis suggests that the people with ID were almost 20 years younger than other people in those settings. Almost one quarter were identified as being at likely risk of dying within 6 months. At Time 2, 22 people (17.6%) with ID had died. Their average age of death was 71.7 years (SD=7.97). Of those perceived to be at likely risk of death, 25% had died. Data on end of life care for this population are currently being analysed.
Conclusion: People with ID living in non ID settings maybe be amongst the oldest of older people with ID. It is conceivable that although not a predominant provider of carer, such services may be playing a significant role in end of life care to people with ID.