End of life care in dementia
How can we best support people with dementia to have a good death or to die as they would wish? What particular issues arise for carers at this time?
Explore the links below to find out about some of the most important areas of care for people with dementia at the end of their life.
Find out about
End of life care in dementia requires good person-centred care. Living well with dementia also includes supporting a person with dementia to die well, or as they would have wished. Be aware of the range of symptoms that a person with dementia may experience at the end of life. Support family carers and help them to understand what is happening at the end of life.
Pain in advanced dementia
Pain in advanced dementia is a common symptom. People with dementia experience pain just as much as anyone else. Pain in people with dementia is often poorly recognised and undertreated, and yet it is not difficult to treat. Caregivers need to work hard to understand a person's verbal and non-verbal signs that they are in pain. Uncontrolled pain can seriously affect a person's quality of life.
Eating and drinking at the end of life
People with advanced dementia often experience problems with swallowing. Swallowing problems can be well managed. Towards the end of life, a person with dementia may take in very little food and fluids, which may make family carers worry that the person is starving to death, when in fact they are not. Most health professionals now believe that tube feeding at the end of life is not good practice and prefer food and fluids to be given by mouth.
End of life care and carers' needs
Family carers often talk about ‘losing the person they knew’ with dementia before they die. Carers often feel guilty if their relative who has dementia enters a care home. End of life care decisions are not easy for carers. There is a lot you can do to support carers at the end of life of the person with dementia.
Care in the last days and hours of life with dementia
Dying is a natural part of life, and it is important to plan well for the last few days and hours of life. People with dementia should be able to die in comfort, and we can do a lot to help manage symptoms. The support we offer at this time must be in keeping with a person’s wishes, their spiritual views, culture and life history. Family and friends will need emotional support too, and timely and accurate information.
All SCIE resources are free to download, however to access the following download you will need a free MySCIE account:
- What the research says: End of life care (2013)
Useful links Open
Care of dying adults in the last days of life
This December 2015 guideline from NICE (NG31) covers a range of issues, including communication and shared decision-making, as well as hydration and managing common symptoms, in the last two to three days of life.
Dementia and end of life planning
This information on the NHS Choices website presents information on care at home, hospice care and palliative care for people with dementia and includes a five-minute video on palliative care at home for people with dementia.
Difficult conversations: making it easier to talk to people with dementia about the end of life
The National Council for Palliative Care (NCPC) and the Dying Matters Coalition produced this booklet to help both professionals and carers of people with dementia to open up conversations about end of life wishes, particularly early in the dementia process. The booklet is available to download from the NCPC or Dying Matters Coalition website for a small charge.
End of life care for people with dementia living in care homes
This 2012 research briefing from SCIE looked at this issue from a range of perspectives, including people with dementia, family carers and care home staff, and found that more research and support is needed in this area.
Identifying pain in people with dementia
The pharmaceutical company NAPP ran a campaign during 2014 called ‘See Change: Think Pain’ in which promoted awareness about the importance of identifying and responding to pain in people living with dementia. NAPP has developed a range of resources to support the campaign, including 10 videos, a booklet for care staff, a booklet for family carers, a poster, and a report of a major survey of care homes on the issue of pain in people living with dementia.
Living and dying with dementia in England
This 2014 joint report from Marie Curie and Alzheimer’s Society investigates the barriers to people with dementia receiving good end of life care in England.
Time to talk?
This leaflet put out by the Dying Matters Coalition looks at how to start conversations with people with dementia about end of life care, and it covers ‘What to talk about’ and ‘What happens if you don’t talk’, and ‘When to talk’.
Dementia end of life care: special interest group (SIG)
A new network run by Dementia UK and Hospice UK provides an interactive forum for practitioners with an interest in dementia end of life care. The group meets regularly and summaries from the meetings can be downloaded from the Hospice UK website.