Perspectives on end of life care

September 14, 2018

A new report has been released sharing perspectives on end of life care and post-bereavement support of people living with dementia and their carers.

In 2017, DEEP, The Dementia Engagement & Empowerment Project, (the UK network of Dementia Voices) and tide, together in dementia everyday (the UK network of carers of people with dementia), held a series of workshops in North West England to stimulate conversations about end of life care with people living with dementia and their carers.

The aim of the workshops was to gather perspectives on end of life care and post-bereavement support and share them as part of the opening plenary for the 2017 UK Dementia Congress in Doncaster. The conference focused on end of life issues for people with dementia and their carers, and particularly post-bereavement support.

End of Life Care and Post Bereavement Support - Shifting the Conversation from Difficult to Important aims to shift end of life conversations from difficult to important. It found that people living with dementia and their carers need much more support in being enabled and empowered to have conversations about death and dying so that they can put plans in place while the person with dementia is able to contribute.

The report into perspectives on end of life care also revealed that the sense that these conversations are ‘difficult’ was largely felt by professionals, because of their own personal and professional vulnerabilities and lack of skills, knowledge and competence to initiate and facilitate these conversations.

The research suggests that professionals need additional education and appropriate training and support to feel more confident supporting people living with dementia generally, but also in facilitating and empowering people living with dementia and their carers to begin discussing their plans around and perspectives on end of life care and post-bereavement support.

Anna Gaughan, CEO of tide and Life Story Network said, 'This series of workshops with people with dementia and family carers around the importance of conversations around end of life care illustrates the need for professionals to embrace their own vulnerabilities in initiating and engaging with this subject. Much more work and practical training needs to be undertaken with frontline staff to build their confidence and empower them to have the courage to create safe spaces for these much needed and valued conversations to unfold. This training needs to be co-produced and co-delivered with the people, who matters most – people with dementia and their carers.'

Rachael Litherland, CEO Co-Director at DEEP said, 'This report conveys the rich and emotional discussions that people with dementia and carers want to have about end of life. It was a privilege to be witness to these discussions – and this report is packed full of recommendations about the issues that are important to people, as well as the practical things that can be done to enable these conversations.'

You can download the report on the tide website.

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