EMBED-Care Public and Policy Engagement
Public and Policy Engagement
As the largest ever dementia and end of life care grant in the UK, the EMBED-Care Programme's public and policy engagement is ambitious. We are using a range of visionary and novel approaches to engage with varied audiences from the public through to Parliament, to widen knowledge about dementia and end of life care and the EMBED-Care Programme.
Public Engagement
The integration of Public Engagement across EMBED-Care is a two-way process between the research team and the public to ensure that the impact of the programme reaches a wide audience, from those already engaged in some way with dementia and those who may not have thought about this before. At the start of the programme the whole team received bespoke public engagement training.
Our Public Engagement is being supported by experts in the field, Dr Emily Scott-Dearing, Emma Pegram and the Science Gallery London.
Policy Engagement
We are working with Marie Curie to guide our policy engagement. This began in January 2020 with a ‘Dementia Summit’ involving the UK’s leading palliative and dementia charities.
We will begin our engagement with parliamentarians with an expressed interest in dementia care and develop these relationships.
We will conduct a YouGov poll to better understand the public’s attitudes towards dementia.
EMBED-Care Dementia Summit, January 2020
The Dementia Summit aimed to build consensus between EMBED-Care and charities in the fields of older people, dementia, palliative care and end of life care. It also aimed to be the starting point to develop a long term and meaningful engagement between the parties. The purpose of the summit was to explore whether and how we might work together to achieve a shared intention of engaging policy makers to leverage and sustain change on increasing access to palliative care for people affected by dementia.
The discussion raised a number of issues and it was recognised that dementia palliative and end of life care was an important issue, but not necessarily a priority for all those present. However, there was agreement that working together as a collective to find solutions will have greater impact. It was acknowledged by all those present that people with dementia are not getting the end of life experience that they should do. The outcome of the meeting was the development of a statement:
We are committed to raising awareness that dementia is a progressive life-limiting condition. We believe that people should be able to live well and die well with dementia. We call for equitable health and social care for people with dementia irrespective of prognosis or severity. This should include care and support that is driven by the principles of palliative care, an approach based on their physical, social, spiritual, psychological and emotional needs. We support the aims of the EMBED-Care programme to foster collaboration between dementia and palliative care expertise to improve care for people living and dying with dementia and those affected by dementia.
EMBED-Care YouGov Poll, 2022
EMBED-Care commissioned YouGov to gain an insight into the public's understanding and perceptions around dementia, palliative and end-of-life care. The PDF provides further details about the poll and results.
EMBED-Care at Science Museum Lates, 2023
1. Knowing me, Knowing You: a card game informed by findings from EMBED-Care data collection. In pairs, participants picked three cards out of 13, each with suggested preferences around end-of-life care and then tried to guess what each other had chosen to see how well they knew each other.
2. Wishing Tree: visitors were invited to write what would be important to them towards the end of life on a leaf and to hang this on the tree.
3. Quiz: this tested visitors against EMBED-Care’s YouGov survey about dementia and palliative care and how much they knew about these subject areas.
Read more about EMBED-Care's 'night at the museum' in an EAPC blog.EMBED-Care, Festival of Social Science, 2023
In November 2023 the EMBED-Care Team ran a public engagement event at UCL as part of the ESRC's Festival of Social Science. This was aimed at students and focused on the role of family or informal caregivers for people with dementia. Across the day, students were invited to play a game of carer snakes and ladders to highlight the ups and downs of caring for some with dementia. They were also invited to add a leaf to the wishing tree to either share their experiences of caring for someone with dementia or to share how they would like to be cared for towards the end of life.
Dementia Journeys, 2024
EMBED-Care will be holding an exhibition at Science Gallery London in 3rd April- 22nd June 2024.
Dementia Journeys: Towards Better End of Life Dementia Care powerfully presents the experiences of those who care for people with dementia towards the end of their lives, and uncovers ways in which care for people who are dying with dementia could be improved.
The exhibition will feature the stories of carers told through photography by two-times winner of BJP Portrait of Britain Allie Crewe, and comic strips by pioneering cartoonist, doctor and storyteller Ian Williams, alongside interactive elements.
This exhibition has been created in response to Empowering Better End-of-Life Dementia Care - a 6-year research programme jointly led by University College London and the Cicely Saunders Institute at King’s College London that aims to generate a step-change in how care is provided for people at any age with any type of dementia.