End of life care for people with learning disabilities

This content is courtesy of Mencap

One of the unavoidable features of life is death.

Regardless of age, wealth, status, social class or disability everyone at some point will be confronted with their own mortality and the mortality of those closest to them.

There are 1.5 million people with a learning disability in the UK. Like all of us, they are individuals who want different things in life and can make choices about how they want to live. They just need the right support.

However, they still remain one of the most marginalised groups in contemporary society (DH, 2001), and never more so when it comes to death and dying.

'We know that many people with a learning disability have poorer health than other people and are more likely to die younger' (Mencap, 2007) and end-of-life care for this population remains inconsistent across the UK.

This best practice guide has been written and designed as a direct result of working alongside individuals with a learning disability, families, friends, advocacy groups and various professionals in North Staffordshire during a little over two years (2006-2009).

It has been developed specifically for those carers who support people with a learning disability diagnosed with a condition requiring end of-life care from within a variety of caring contexts.

Case illustrations are used throughout to ensure that the guide remains grounded in practice so that theory can relate to practice in a meaningful way.

The aims of this guide are to:

  • raise the profile of the support needed by people with a learning disability who are dying
  • acknowledge the varied impact that both dying and death may generate on individuals and family members
  • promote understanding about the theoretical concepts around life limiting illness and death
  • focus upon the practical approaches that may be used to support people with a learning disability diagnosed with a life limiting condition
  • promote a consistency of end-of-life care and support to all people with a learning disability regardless of where they live in North Staffordshire and beyond
  • act as an evidence-based resource to facilitate good end-of-life care and support to people with a learning disability.

The guide is available to download as a PDF.