Eating and drinking at the end of life

People with dementia can develop problems with eating, drinking and their ability to swallow at any stage of their illness, although it is most common to see this at the more advanced stages. In this section you'll be able to explore why this happens and how you can help.

When a person with advanced dementia takes in only a very limited amount of food and fluids or can no longer swallow safely, it 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. It is important to try and maintain eating and drinking, even in very small amounts, for comfort and enjoyment. Speech and language therapists can help and advise about swallowing changes at this time.

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 are there 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. In addition, changes in sensation and sensory awareness means that some people will find the experience of eating feels very different and may, at times, feel unpleasant to them.

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, but they are not. In the end stages of dementia (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 does 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 can be helpful for some other health conditions, but it is usually not considered to be helpful at the end of life in dementia as a way of managing reduced oral intake.

What is artificial nutrition and hydration (ANH)?

‘ANH’ stands for ‘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. This may be referred to as enteral feeding or, perhaps, tube feeding.

The most common methods are:

Openfeeding with a tube

The tube passes through the nose and down into the stomach (known as a nasogastric tube), or the tube can go directly through a hole into the stomach wall (gastrostomy), which is also known as PEG feeding (or in full, percutaneous endoscopic gastrostomy feeding)
Openfluids

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 (ANH) 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. This is because inserting tubes or IV drips requires hospital admission, which 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.

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.
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. Therefore, 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 from a nurse or doctor. At this time, the most important part of maintaining comfort is with regular mouth care.

Is the person suffering?

Whether or not a person living with dementia is suffering 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.

It is helpful for family if care staff are able to explain why this is happening: 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. 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.

If there are signs of pain or discomfort, seek the advice of a nurse or doctor.

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. It is important to support them to have food and drinks that are as enjoyable and as safe as possible. 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 if you are concerned about a person's swallowing. They can perform an assessment 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 supplements may be recommended if the person is under the care of 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.

Care staff can support family members by giving them information about what is happening and why. Listen to their concerns about food an nutrition and try to answer them. If you do not know the answer, it is ok to say so and find someone who can explain.