Dementia - end of life care

You will find below resources that support best practice in end of life care for people with dementia and support for their carers.

In other sections of the website you can also:

familiarise yourself with the UK national strategies and standards
develop your skills and knowledge with resources designed for learning
find details of key agencies and networks.

Some of the resources on this page are in PDF format - see how to access PDF files.

Resources and tools

Dying Matters: Time to talk. Starting end of life care conversations with people affected by dementia (PDF 623KB)
This resource aims to support end of life care discussions with people with dementia. Time to Talk highlights the importance of discussing end of life care as early as possible, and covers topics such as what to talk about, when to talk and what might happen if you don’t talk.

Gold Standards Framework (GSF)
The Gold Standards Framework (GSF) is a systematic evidence based approach to optimising the care for patients nearing the end of life. It aims to improve the quality, coordination and organisation of care in primary care, care homes and acute hospitals. The framework is concerned with helping people to live well until the end of life and includes care in the final years of life for people with any end stage illness in any setting.

Liverpool Care Pathway for the dying patient (LCP)
The LCP is an integrated care pathway that is used in the last hours and days of life. It aims to transfer the best quality for care of the dying from the hospice movement and other clinical areas. It has been implemented in hospitals, care homes and in the individuals own home.

National Council for Palliative Care and Dying Matters (2011) Difficult conversations for dementia
The short booklet was developed as part of the Dying Matters coalition. It aims to help anyone, unpaid or professional, caring for someone with dementia to open up conversations about end of life wishes and preferences, in order to enhance quality of life. The guidance is based on conversations with around fifty people affected by dementia; people with dementia, carers and former carers. It is made available on the National End of Life Care Programme website.

National End of Life Care Programme (2010) Care towards the end of life for people with dementia: a resource guide
This brings together information resources, sources and good practice in end of life care (EoLC) for people with dementia. The guide is principally for health and social care professionals and allied professions and is particularly for those who work with people with dementia who are not EoLC experts and EoLC experts who are not particularly knowledgeable about dementia.

The National End of Life Care programme in conjunction with other organisations including the Royal College of Nursing, has also developed a guide highlighting the key nursing contributions within the six steps of the end of life care pathway - see Route to success: the key contribution of nursing to end of life care.

National End of Life Care Programme: Preferred priorities for care (PCC)
This patient held document is designed to facilitate patient choice in relation to end of life issues. “The explicit recording of patients/carers wishes can form the basis of care planning in multi-disciplinary teams and other services, minimising inappropriate admissions and interventions”. The PCC also records services being accessed. Guidelines for health and social care staff on using the PCC are also available.

NICE Pathways: Dementia overview
The NICE dementia pathway brings together all related NICE guidance and associated products in interactive topic based diagrams. The pathway includes a section on Palliative and end of life care.

Peterborough Palliative Care in Dementia Group (2010) Compromised swallowing: a practical guide to nutrition, hydration and medication in advanced dementia
Written both for carers and nursing and medical staff this offers practical guidance and addresses the medical management of symptoms. It is made available on the National End of Life Care Programme's website.

SCIE Dementia Gateway: End of life care
This section of the Dementia gateway brings together information and resources to support good end-of-life care for people with dementia and some of the particular issues raised by dementia in this context.

SCIE Research briefing 40: End of life care for people with dementia living in care homes
This research briefing is about the care provided in care homes to people with dementia in the period leading up to the end of their lives. It aims to provide an overview of a range of issues important to care home residents, carers and providers. View also: Research summary.

You & Yours: BBC Radio 4 interview
On the You & Yours programme on BBC Radio 4 on 18 June 2012, Rachel Thompson, RCN Dementia Project Lead was interviewed by Julian Worricker along with Dr Linda Patterson (consultant physician) who was speaking on behalf of the Alzheimer's Society. The topic around the challenges faced in recognising end of life in dementia and treating pain when people have difficulty with communicating, was based on the experience of a son whose father was cared for in a care home but was not given adequate pain relief. The interview included questions on how nurses should support patients who are dying but can’t speak for themselves and the challenges in spotting whether or not someone is genuinely in pain. In response Rachel discussed the difficulties for nursing staff in recognising the end stages of dementia, the need for more support and training for nursing staff in care homes in dementia and supporting people at the end of life; the role of specialist nurses. Listen to the interview at Dementia pain-relief.

Stories and good practice examples

Practitioners have shared improvements they have made in the delivery of dementia care and services describing what changes occurred as a result of their initiatives and what they learned from the experience. The stories have been arranged according to the five key ingredients in the Commitment to the care of people with dementia in general hospitals. To read these improvement stories see Best practice examples.

Department of Health (2011) Living well with dementia: a National Dementia Strategy - good practice compendium
This good practice compendium has been compiled from across the regions to support local delivery of the national dementia strategy. It brings together practice examples on a wide range of dementia care.

Patient Voices
The Patient Voices programme developed by Pilgrim Projects works with healthcare professionals, carers and patients to enable them to develop their own stories and narratives and is involved in ongoing research and development on the use of digital storytelling in health and social care.
The real Malcolm. "When Alzheimers stripped Malcolm of his talents, speech and mobility, Barbara reflects on the quality of services in physical end-of-life dementia care, and on nurturing the real Malcolm through his senses and emotions right to the very end".

SCIE Social Care TV
Social Care TV is an online channel providing video-based training resources and general interest programmes for everyone involved in the social care sector. A relevant video is:
Dementia and end of life care
A film about supporting people with dementia to die well, where and how they and their family wish.