Growing older with learning disabilities (GOLD)

People with learning disabilities often face health and social inequalities as they grow older. We all want to support people to live well and continue to have the best lives that they possible can.

About our work

Growing Older with Learning Disabilities is an initiative facilitated by Bild and we held our first conference on 26 March 2019. Experts presented current thinking around early mortality, living with dementia and supporting people with learning disabilities to come to terms with their own deaths, and those of loved ones.

We know we are not good at talking to people with learning disabilities about death. This includes ensuring people have as good a death as possible and we explain what has happened to those left behind in order to minimise trauma.

This is the first generation of people with learning disabilities who are growing older in the community following the demise of the long stay hospitals. Improvements in healthcare are ensuring that individuals with learning disabilities are living longer (even despite current health inequalities).

We have the first generation of older carers continuing to support their (adult) children in the community and often in their own homes. Older carers are worried about what will happened when they die and who will care for their (adult) children. There are currently 2 million carers in England and Wales who are aged 50-64 and 1.3 million carers aged 60 and over.

Our aim and scope: to work collaboratively to improve provision and support for people with learning disabilities

  • As they grow older
  • Who have older carers
  • Who have dementia
  • Who are preparing for end of life
  • (Across the UK)

Our vision:

  • People with learning disabilities live a good life as they grow older
  • People with learning disabilities receive good support and provision as they grow older (including good palliative care)
  • People with learning disabilities, family carers and staff have access to information and resources they need and involved in planning their own support and futures (including planning for end of life)
  • People with learning disabilities have as good health and wellbeing as rest of the population (reduced health inequalities, loneliness and social isolation, risk of premature death)

Find out about the national steering group