Palliative and end of life care

Our aims

Providing more information about end-of-life care for people living with dementia and carers will support people to access care when they need it. This will lead to reduced distress and avoid unnecessary hospital admissions at the end of a person’s life.

This project will:

• Ensure information about local resources and national resources are available in our Greater Manchester Dementia Care Pathway.
• Develop a Greater Manchester information sheet for people affected by dementia. This will be co-produced by people living with dementia and carers.

We’ll also support practitioners who work with people affected by dementia by:

• Developing co-produced guidance for practitioners to support people living with dementia and their carers at the end of life
• Supporting localities to continue to implement end of life training , which may be linked to the Rules of Thumb training

We’ll continue to work closely with the Greater Manchester Strategic Clinical Network for Palliative and End of Life Care. We’ll also explore opportunities for Greater Manchester to become involved in local and national research projects.

Why this matters

Dementia and Alzheimer’s Disease continue to be the highest cause of death in England and Wales (Office for National Statistics, February 2023). Due to the complex and unpredictable disease trajectory people with dementia are less likely to receive palliative care. This can result in unmet needs and potentially burdensome interventions until death (Browne et al, 2021). It’s predicted that the number of people living with dementia who will need palliative care will almost quadruple by 2040 (Etkind et al, 2017).

What we’ve achieved so far

Dying Well is one of the stages our Greater Manchester Dementia Care Pathway. We’re in the process of updating this resource.

• We published the Greater Manchester Syllabus for training on end of life care of those with dementia
• We supported the publication of the ‘Let’s Talk About Death Shall We’ booklet for people living with in dementia.
• With the support of Dementia United, the Strategic Clinical Network Palliative and End of Life Care developed a free training resource based on the Rules of Thumb framework (https://eolp.co.uk/SIXSTEPS/rules-of-thumb/)

End of Life Care Previous Work Summary Report

What’s next?

This project is part of our Dementia and Brain Health Delivery Plan 2023 to 2025. We’re working closely with our Lived Experience Group, Dementia Carers Expert Reference Group and partners across Greater Manchester to take this work forward.

You can find out more about our Lived Experience Group here

You can find out more about our Dementia Carers Expert Reference Group here

Useful national resources: end of life care

If you would like further information or to get involved with this project, please email gmhscp.dementiaunited@nhs.net and we will direct you to the relevant project manager.