End of life care for people with dementia: new research briefing from SCIE


End of life care is an emotive subject and perhaps none more so than in people with dementia where it can be particularly difficult to ensure that individuals get the care they want in the final months of their life.

Both the Department of Health and NICE have published guidance in this area and this is now supplemented by a new research briefing from the Social Care Institute for Excellence, which looks at the care provided in care homes to people with dementia at the end of their lives.

The authors highlight that the research and policy evidence for this population remains quite sparse and they set out the implications for policy makers, researchers, care home staff, people with dementia and their family carers.

The key messages from the briefing are:

  • Dementia is a progressive condition but it is not always easy for care staff and family carers to tell when the end of life is approaching. This means that people with dementia sometimes do not receive the end of life care they would have wanted.
  • People with dementia may be willing and able to discuss preferences even when they are no longer considered to have the capacity to make advance decisions in their legal form.
  • Advance care plans, or similar expressions of views, are important ways in which people with dementia can express their wishes about end of life care. Not enough is known about how to implement these wishes effectively, especially where there is disagreement between a person’s advance care wishes and the views of family members or professionals.
  • When a person moves into a care home, there should be opportunities to discuss advance care plans sensitively at a carefully chosen time or when the moment arises. However, it is also important to respect the wishes of people who do not want to specify in advance what end of life care they wish to receive.
  • There is little research on the provision of specialist palliative care support and the integration of services for people dying in care homes. There is also a lack of research on the training of care staff to recognise and respond to the need for palliative care.
  • Care staff may find it difficult to raise the subject of end of life care, but training and support will help them become more confident.
  • Making treatment decisions on behalf of another person places an emotional burden on family carers, but care staff can help by informing them about what is happening and what to expect. Good communication with staff is highly valued by family carers.


Moriarty J, Rutter D, Ross PDS and Holmes P. End of life care for people with dementia living in care homes (PDF). Social Care Institute for Excellence, Research Briefing 40, May 2012.

End of life care strategy: promoting high quality care for all adults at the end of life (PDF). Department of Health, 2008.

End of life care for people with dementia. National Institute for Health and Clinical Excellence, 2011.

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Andre Tomlin

André Tomlin is an Information Scientist with 20 years experience working in evidence-based healthcare. He's worked in the NHS, for Oxford University and since 2002 as Managing Director of Minervation Ltd, a consultancy company who do clever digital stuff for charities, universities and the public sector. Most recently André has been the driving force behind the Mental Elf and the National Elf Service; an innovative digital platform that helps professionals keep up to date with simple, clear and engaging summaries of evidence-based research. André is a Trustee at the Centre for Mental Health and an Honorary Research Fellow at University College London Division of Psychiatry. He lives in Bristol, surrounded by dogs, elflings and lots of woodland!

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