The Empowering Better End of Life Dementia Care (EMBED-Care) research team, which included researchers and public and patient involvement (PPI) members, took part in the Science Museum Lates, as part of the NHS 75th birthday celebrations on Thursday 27 July.

 

The researchers had a stand called ‘The D Words’, where they engaged with hundreds of young people about Dying with Dementia and palliative and end of life care.

People visiting the stand were invited to take part in three different activities:

  • A wishing tree, where people were invited to add annotated leaves saying what would be important to them at the end of their life, which became laden with leaves across the course of the evening
  • A myth-buster quiz, which tested how much people knew about dying with dementia and palliative end of life care
  • A card game called ‘Knowing me, knowing you’, which explored how well people knew what would matter to their friends or families at the end of life and the importance of sharing such wishes in advance. Young people really enjoyed playing this game with their friends and partners.

All the activities proved to be very popular sparking many conversations and questions to the team. People said many things when asked about what would be important to them at the end of life. Many wanted to be surrounded by their friends and family, at their home,  and to ensure their loved ones were supported. Some wanted to have a glass of rum and coke, their guitars or their robots to be taken of, and to wear their favourite lotions and perfumes. Importantly, a lot of people wanted to be at peace, pain-free and comfortable.

Dementia is leading the cause of death in the UK and it will continue to affect many of us in the upcoming years. Our public opinion survey showed that most young people are not aware of the impact of dementia, and what palliative and end-of-life care can offer to improve care. Young people are the future and it is important to get them to start thinking and engaging about dementia.

Emel Yorganci, PhD training fellow, EMBED-Care

Why this research matters

Dementia is the commonest cause of death in the UK. By 2040 it is estimated that annually 220,000 people will die with dementia, with many experiencing distressing symptoms like pain and agitation. Access to good care for people with dementia towards end of life is highly unequal. In the UK, those who make decisions about care and develop policy do not have sufficient information to deliver solutions to improve care that focuses on the person and their needs or to plan future services, for which there will be increasing demand.

About EMBED-Care

EMBED-Care brings together collaborators, clinicians, policymakers, patients, families and carers to inform the development and testing of an intervention designed to improve palliative care for people with dementia. The intervention will prioritise comfort and what is important to each person to ensure the right services are in the right place at the right time.

Thank you to all who participated 

The EMBED-Care team would like to thank everyone who visited the stand and participated in the activities.

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