Research will rethink end-of-life care for people with learning disabilities

A new collaborative research project for Wales and England, led by Professor Stuart Todd at the University of South Wales (USW), has been awarded significant funding from Marie Curie, the UK’s leading end-of-life charity.

The study will explore how people with learning disabilities can experience death and dying differently and how healthcare services can adapt to meet their needs more effectively.

Professor Todd said: “Current research suggests that people with learning disabilities are dying from conditions not traditionally recognised as life-threatening. This means that they often face different outcomes at the end-of-life, with many dying without access to appropriate care.

"The goals of our research are to see if there are critical events that might help improve access to appropriate support, ensuring that their unique needs are met with dignity and compassion and potentially to influence how end-of-life care services are delivered to people with learning disabilities across the UK.”

The study includes researchers from USW, Kingston University and the University of Southampton.

Professor Todd said: “The study team is made up of experts who can offer unique perspectives. For example, within the team at Kingston University, there are researchers with a learning disability who will help to shape the study.

“We are also supported by organisations, ‘All Wales Forum of Parents and Carers’ and ‘Learning Disability Wales’, who will assist us in seeking advice from individuals with learning disabilities, family carers and professional caregivers. This will ensure that their voices and experiences are central to the research, as well as helping us to understand and interpret the complex issues at hand.”

The research team will conduct in-depth interviews with bereaved family members and paid carers who have experienced the loss of a person with learning disabilities. These conversations will focus on understanding the final months of life, exploring critical moments when death might have been anticipated but wasn’t recognised until late in the process. The study will seek to uncover whether there were opportunities to discuss their concerns with healthcare professionals, and if it might have been appropriate to anticipate that the person was dying earlier.

The study will also engage GPs who often play a pivotal role in managing access to end-of-life care. Through a series of online discussions, GPs will explore the difficulties they face in identifying when someone with learning disabilities may be nearing death, and how these sensitive conversations might be better managed. There will also be similar discussions with learning disability professionals and end-of-life care practitioners.

“Our work will draw attention to the fact that people in this population die differently, and if we continue applying the same formula designed for cancer or dementia patients, we will miss the mark for many,” said Professor Todd.

“We need to reimagine what compassionate, appropriate end-of-life care looks like for individuals with learning disabilities. This means providing better support not only to healthcare professionals but also to families and carers who are navigating these deeply emotional and complex moments.”

Marie Curie Associate Director of Research, Sabine Best, said: “Marie Curie is striving for everyone to have the best end of life experience, reflecting what’s most important to them.

“People with learning disabilities often have additional needs in palliative and end-of-life care. Understanding and considering these needs is critical to making sure they're getting person-centred care.

“We are delighted to support this research to improve awareness of the needs of people with learning disabilities to ensure they receive the best possible care towards the end-of-life.”