LBS entry to Dementia Action Alliance annual report

What our organisation does

The Lewy Body Society is the only charity in Europe exclusively concerned with Lewy body dementias (LBDs). The charity supports research into these dementias and raises awareness among the general public, the medical profession and policymakers to ensure that people affected by LBDs get the best possible treatment, care and support.

What we did this year

  • Funded two pieces of research – one to spot genetic changes associated with dementia with Lewy bodies (DLB); the other to use nerve cells made from stem cells to test potential drug treatments for DLB.
  • Worked with Parkinson’s UK to increase our campaigning and influencing, collaborating on Dementia Awareness Day, the All Party Parliamentary Group on Dementia’s consultation on early diagnosis, and the NICE consultation on the Dementia Care Standard. Our focus is to ensure that health and social care professionals and policymakers take the distinctive needs of people with Lewy body dementias into account when designing dementia awareness campaigns and services.
  • We have been building up a group of ‘experts by experience’ – carers and people affected by LBDs – who can advise us on messaging and strategic priorities. New people join our Facebook community almost every day, and we have extended our website content ( throughout the year to provide information resources that will help them gain the best possible care and support.
  • Participated energetically in Dementia Action Alliance activities at national and regional level.

What we will do next year

  • Raise awareness and provide leadership on Lewy body dementias within the dementia arena by setting up a multidisciplinary advisory committee of expert health and social care professionals, and by continuing to grow our ‘experts by experience’ group. With their advice and guidance, we will work to influence health and social care policy on behalf of people affected by LBDs. We will also seek opportunties for them to share their insights first-hand, to increase understanding of the lived experience of LBDs.
  • Extend our collaboration with Parkinson’s UK, and seek new partnerships with other relevant organisations, to explore how best to increase support for people living with LBDs. We will identify how best to respond to the demand for peer-to-peer support, and access to leisure and support activities and opportunities in the community, for people affected by LBDs.
  • Continue actively to respond to the Alliance’s calls to action.