Eating and drinking at the end of life
People with dementia can develop problems with swallowing food or fluids in any stage of their illness, although it is most common to see this at the advanced stage.
When a person with advanced dementia takes in only a very limited amount of food and fluids or can no longer swallow safely, it may seem that they are starving to death. In fact, they are not. Even so, medical professionals may consider using tube feeding at this time. This can be an extremely difficult and emotional time for family and care staff as they try to work out how to best respond and care for the person with dementia.
What happens when Pete can no longer swallow? Will he just starve to death? I don’t want him suffering.A woman speaking about her husband who has dementia.
Why swallowing problems?
As dementia progresses it affects the area of the brain that controls swallowing. In advanced dementia the person may have a weak swallow or lose the ability to swallow safely, for example they may cough or choke after swallowing food or drinks (see the ‘Chewing and swallowing problems’ feature in the ‘Eating well’ section).
Swallowing problems can also be caused by general weakness and frailty of the person, that is, their swallowing muscles become very weak.
Other problems – such as having a sore mouth or sensitive teeth – can cause a person to take in less food or develop swallowing problems. You should bring these difficulties to the attention of a doctor, nurse or dentist as soon as possible to review.
Are they starving or dehydrating to death?
It may seem that the person is being starved or dehydrated to death when, in fact, they are not. In the end stages of dementia (that is, in the last few months or weeks of life), the person’s food and fluid intake tends to decrease slowly over time. The body adjusts to this slowing down process and the reduced intake. It is thought that by this stage the hunger and thirst part of the brain has now stopped functioning for most people.
The person may be immobile and so not need the same amount of calories to sustain their energy levels. Having reduced food and fluid intake and decreased interest in this can be thought of as a ‘natural part’ of end of life and dying.
Giving increased food and fluids artificially to a person who has been having a reduced intake can be harmful.
What is artificial nutrition and hydration (ANH)?
‘ANH’ means ‘artificial nutrition and hydration’ and refers to methods used to provide food and fluids to people who are unable to swallow in the normal way. The most common methods are feeding with a tube that passes through the nose and down into the stomach (known as a nasogastric tube) or directly through a hole into the stomach wall (gastrostomy) also known as PEG feeding (or in full, percutaneous endoscopic gastrostomy feeding). Fluids can also be given with these tubes or through a drip that goes into a vein (intravenous or ‘IV’) or just inserted under the skin (subcutaneous or ‘SC’).
Is artificial nutrition and hydration a good idea?
Most health professionals now feel that a person with advanced dementia and in the end stage of their illness should not be fed by tubes or drips. Why? Inserting tubes or IV drips requires hospital admission and this can be very distressing for the person. They may then pull out the tubes and drips, and the site of the tubes and drips can become infected and sore. As this carer explains: ‘He was very distressed in hospital and kept pulling out his tubes – he didn’t understand what was happening to him and they didn’t know how to help him,’ (quoted in End of life care for people with dementia 2009).
We also know that giving food and fluids in this way does not benefit the person and in fact may cause them harm. For example, giving a person food or fluids via a nose or stomach tube does not: stop the person from coughing or food or fluids going down into their wind pipe reduce the risk of chest infections improve the person’s ability to care for themselves or for them to mobilise when they previously could not stop the person from losing weight improve the healing of pressure sores improve quality of life or prolong life.
In fact, we now know that a third of people with advanced dementia who have a tube inserted for feeding die within one month. So the case against ANH is a strong one.
Sometimes, a person may show signs of feeling thirsty, for example sucking when mouth care is given. If this happens, seek advice form a nurse or doctor. They may consider giving subcutaneous fluids. Usually though, at this time, the most important part of maintaining comfort is with regular mouth care (see the feature on ‘Care in the last days and hours of life’ in this section).
But is the person suffering?
This is the most common concern for both family and carers, who are often unaware of why the person is having difficulty swallowing or does not want to eat or drink anymore. Explain to the family why this is occurring: that is, most people now think that a person with advanced dementia takes less and less food and fluid towards the end of life and their body adjusts so that they do not feel hungry or thirsty, and therefore they are not suffering. Family may think the situation is due to poor care, but a good explanation should help them understand and feel reassured.
Should the person continue with food and fluids by mouth?
Yes. People who can eat and drink – even if it is only spoonfuls of pureed food or sips of fluid – should be encouraged to do so. However, do this only if the person does not cough or choke. The person must be able to take food and fluids safely (see the ‘Chewing and swallowing problems’ feature in the ‘Eating well’ section).
Ideas that may help
Offer small amounts of food and fluids at a consistency that the person can manage and is safe. Always seek advice from a speech and language therapist who can assess a person’s swallowing and advise on the most suitable consistency.
Do not worry too much at this stage about a balanced diet. The person should be given whatever they like, even if this is only sweet things. Nutritious drinks could be given if the person can no longer take even pureed food: seek advice from a dietitian. Remember when the person is dying it is natural that they will become unable to eat and drink. Food and fluids by tubes or drips will not stop this from happening.
Ensure the person is in a good position when they are being helped with taking in food or fluids, for example make sure they are as upright as possible, and only offer food and fluids when the person is fully awake.
Support family members by giving them information about what is happening and why. Listen to their concerns and try to answer them. If you do not know the answer, it is ok to say so and find someone who can explain.
Access and download additional resources
Further reading Open
Family Practice Notebook website (2010) Nutrition in advanced dementia: Dementia related malnutrition. Family Practice Notebook.
Marie Curie, NHS Haringey, Barnet, Enfield and Haringey NHS Mental Health Trust, Haringey Council, for dementia and The National Council for Palliative Care (2009) End of life care for people with dementia. London: Marie Curie.
National Council for Palliative Care (2012) How would I know? What can I do? How to help someone with dementia who is in pain or distress. London: NCPC.
Pace, V., Treloer, A. and Scott, S. (2011) Dementia: From advanced disease to bereavement. Oxford: Oxford University Press.
Partridge, R. and Campbell, C. (2007) Artificial nutrition and hydration: Guidance in end of life care for adults.
A joint publication between National Council for Palliative Care and The Association of Palliative Medicine. London: National Council for Palliative Care.
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.
Related pages from this section Open