'End of life care for people with learning disabilities' Practitioner Workshop


On the 23rd April, the ExChange Team was delighted to welcome Stuart Todd from the University of South Wales to facilitate our latest Practitioner Workshop. During the workshop, 'End of life care for people with learning disabilities (LD)', Stuart reported on a large collaborative study of end of life care for people with LD and living in LD services in the UK.


Stuart provided an overview of the research which examined 222 deaths, addressing important statistics that arose in the study.  These included:


  • 37% of the deaths of people with LD in the study, were expected deaths

  • The average age of death in the study was 61.2 years, significantly lower than the average age for people who don’t have LD

  • Out of the 222 deaths examined, only 6% of expected deaths, and 11% of unexpected deaths had a will. The reason for this being that very few individuals with LD in services are told they are dying, with staff regarding it as too difficult or a ‘taboo’ subject.


Attendees of the workshop were highly engaged with lots of audience participation and sharing of best practice. An area discussed with detail, was the question, 'Where are all the elderly people?'  Very few people over the age 60 were in the study. The reason for this was not that they had died, but rather they were transferred to other services such as supported living, hospitals or care services due to factors such as funding and resources. Many deemed this unfair, as it often leads to poorer outcomes with the elderly person being unable to access specific learning disability services.


Discussion then turned to causes of death in people with LD. Research tends to focus on cancer being the leading cause. However, in actual fact, dementia as a cause of death is almost double that of cancer. Unfortunately, very few studies exist that examine dementia as a cause of death in those with LD. It was agreed that this was an area that required further attention.


The workshop also produced some debate regarding residential homes vs supported living for those with LD. As the death rates in both services are very low, both sides shared their experiences on how they would treat someone requiring end of life care.


The workshop concluded with the general difficulties of communicating with people with LD about death and bereavement. It was agreed that more training and resources in this area are needed.