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.
Members of EMBED-Care will have policy placements with a number of relevant charities to gain first had experience of the policy process across the four nations. 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.