End of life care

8. Eating and drinking

This is one of the most difficult areas for families and professionals. As dementia progresses, people often develop problems eating and drinking. The person's appetite decreases and in later-stage dementia they often have difficulties with swallowing safely. People with swallowing problems are at risk both of choking and of food or saliva going down the windpipe, causing an infection. In their final days a person with dementia may stop eating or drinking altogether.

Someone with advanced dementia should be offered food and fluids – even if these are just mouthfuls or sips – for as long as they show an interest and can take them safely. You might wish to help with this as part of the person's care. When this is no longer possible, it is often distressing for carers to see that the person is not taking food and fluid normally by mouth. The situation is made worse because the person with dementia will generally be unable to communicate thirst or hunger for themselves.

Families are often concerned that the person is starving or dehydrating and not being cared for properly. It can be very hard to watch, but you should be reassured to know that the person is not suffering and that this 'shutting down' is a natural part of the dying process. You should discuss the person's feeding with professionals, taking into account the person's expressed wishes and preferences. What is in the person's best interests needs to come first.

Artificial nutrition and hydration

If a person is struggling to eat and drink enough, and their swallowing is unsafe, a natural response might be to consider artificial nutrition and hydration or 'tube feeding'. The most widely used treatments are: 

  • a nasogastric tube – this passes down the nose and into the stomach
  • a PEG tube – this passes directly into the stomach through a hole in the skin.

Each person's situation should be considered individually. Most healthcare professionals now agree that giving food and fluids artificially is not appropriate if the person's swallowing difficulties and reduced intake are a result of advancing dementia. This is because there are no clear benefits from tube feeding, such as better quality of life or better nutrition. However, there are clear disadvantages. For example, PEG means the distress of going into hospital. Tubes cause discomfort, and can also become infected or dislodged, cause sores or be pulled out. 

When a person has no appetite, care staff will still ensure that their mouth feels comfortable. They should keep the person's lips moist and clean, and provide sips of iced water or juice, or an ice cube, if the person can still swallow. They may also moisten the mouth and apply lip balm to keep the person comfortable. Again, you might want to help give some of this care.