Hidden Lives and Deaths

Hidden Lives and Deaths: The Last Months of Life of Older People with Learning Disabilities Living in Long Term Care Settings for Older People in England and Wales

Research group: Dr Stuart Todd, Dr Rhian Worth and Julia Shearn

This research is based on an understanding that a good end-of-life should be available to everyone. Research has looked at the quality of end-of-life care for people living in care homes for the general population.

Although a significant number of people in those settings will have a learning disability they are likely to be a dispersed population and do not figure as a distinct group in care home research. Little is known about this group of people with learning disabilities and the quality of their end-of-life care.

This study aims to find out about the quality of end-of-life care of this ‘hidden population’ of older people with learning disabilities living in in long term care homes for older people in the general population.

Over a two-year period, the study, funded by the Dunhill Medical Trust, will recruit providers supporting 300 people with learning disabilities across England and Wales, who are living in long term care homes for older people.

We will first collect data on some of the characteristics of people with learning disabilities supported in those settings. We will then ask to be informed of any deaths of people with learning disabilities in these services and will send a detailed questionnaire looking at end-of-life care to a member of staff who knew the person who died.

This questionnaire will incorporate an adapted version of the VOICES questionnaire (Addington-Hall, Walker, Jones, Karlsen & McCarthy, 1998; Hunt & Addington-Hall, 2011) which is used to assess the quality of end-of-life care for people in the general population.

The use of VOICES will also allow us to make comparisons with other populations. In addition, some core data will be collected on comparator groups of people in the same settings without learning disabilities who have died.

Findings from this study will be used to bring the presence of this hidden population and their unique needs to the attention of those bodies with influence over shaping and developing end-of-life care policies, resources and interventions.