End of life care

6. Physical needs

Pain

People with dementia are at risk of pain from conditions such as arthritis, pressure ulcers (bedsores), urinary tract infections (UTIs) and constipation, or other diseases that cause pain such as cancer or heart failure. Some people assume that people with dementia don’t feel pain, but this is not true. If a person with dementia is in pain, and this is not recognised and treated properly, they may become very distressed.

As dementia progresses, the person becomes less able to tell others that they are in pain or discomfort. Health and social care professionals and family carers need to understand this and look for other signs, such as the person’s body language that might indicate they are in pain. Staff might sometimes also assume that behaviours that challenge, such as shouting or agitation, are a symptom of dementia.

These behaviours may actually be a sign that the person is in pain or discomfort. It is important for staff to understand this so that any pain can be treated. Some people assume that people with dementia don’t feel pain, but this is not true. If a person with dementia is in pain, and this is not recognised and treated properly, they may become very distressed.

Recognising when someone is in pain

A person with dementia might not always be able to let someone know they are experiencing pain, so it is important for carers and health and social care professionals to ask the person if they are in pain.

Healthcare professionals may use a pain assessment tool for people with dementia. This usually involves recording information about the person and using a scale, chart or checklist to help identify and rate pain. The following things may help when assessing whether the person is in pain:

  • Knowledge of the person – there may be certain things that they typically do when they are in pain, such as cry out or become very withdrawn.
  • Observation – signs that someone is in pain include their behaviour (such as being agitated, irritable, tearful, or unable to sleep), facial expressions (such as grimacing), body language (if they are tense or rocking, or pulling at a particular part of their body) and vocalisations (for example, shouting out, screaming and moaning).
  • Bodily changes – a high temperature, sweating or looking very pale can also indicate pain.

Doctors treating pain may start with paracetamol, which often works well (though it is not as strong as other painkillers). If paracetamol fails then they will try stronger drugs, although these may have side effects (such as increased confusion) and should be carefully monitored. Some people may be on regular pain relief for conditions such as cancer. If pain is suspected the dose may need reviewing. Doctors will also treat any underlying medical conditions that may be causing pain, such as constipation.

There are ways to make the person comfortable that may also help relieve pain. These can include gentle exercise, massage, aromatherapy and warm packs placed over the suspected area of pain.

If a person with dementia is unable to say they are in pain but shows some of the behaviours indicated above, it is useful to look for other possible causes. For example are they hungry or thirsty? Are they too hot or too cold? Is the environment calm and supportive? Could they be anxious or upset?

Eating and drinking

As dementia progresses, people often develop problems with eating and drinking. The person’s appetite decreases and in the later stages of dementia they often have difficulties with swallowing safely. People with swallowing problems are at risk 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 in the later stages of 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. Soft food is often easier for them to eat and liquids that are thickened may cause fewer problems with choking. It is better if the person is able to sit upright when eating and drinking.

It is often distressing to see that the person is no longer able to take food and fluid normally by mouth. Try to remember it is normal for a person approaching the end of their life. The person with dementia will generally be unable to communicate thirst or hunger for themselves, which can also be distressing.

When a person is close to death, they will usually stop eating and drinking. You might worry that the person is starving or getting dehydrated and not being cared for properly. It can be very hard to see, but you should be reassured to know that the person is not suffering. Talk to professionals about food and fluids for the person, including what the person has said or recorded as their wishes. It is important that what is in the person’s best interests comes first.

Artificial nutrition and hydration

If a person is struggling to eat and drink enough, and their swallowing is unsafe, you might think about 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 problems with eating, drinking or swallowing are because their dementia is in the later stages. 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 going into hospital which might be distressing
  • tubes can cause discomfort or sores
  • tubes can also become infected or dislodged, or pulled out.

When a person has no appetite, care professionals will still make sure 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.

Infections

People in the later stages of dementia are at greater risk of infections such as urinary tract infections (UTIs) or chest infections (such as pneumonia). These can be caused by lower fluid intake, swallowing problems and reduced mobility.

People disagree about whether antibiotics should be used to treat infections for a person in the later stages of dementia. It may be appropriate to use antibiotics to ease distress and discomfort at the end of life even if the infection cannot be cured or is likely to happen again. Doctors should think about whether to give antibiotics on an individual basis. They will consider:

  • the likely benefits
  • the risk of side effects
  • the burden of giving the drugs
  • the person’s wishes (if known).

If the person has infections that keep coming back, professionals caring for the person will talk to you about whether it is in the person’s best interests to try and treat any serious infections in the future. In particular, they may point out that treating further infections is likely to involve the person going back into hospital for further antibiotics (which are often injected into a vein). It is important to consider whether that is in the person’s best interests.