End of life care: communication and physical needs

Communication at end of life

In the later stages of dementia, the person is likely to have problems with communication.

They may have sight or hearing problems, and there may eventually come a time when the person can hardly communicate at all as they usually would. This can make it harder to know if they are uncomfortable or in pain, for example.

How can I communicate with a person with dementia at end of life?

There are ways to keep communicating with a person with dementia at end of ilfe.

For example, the person may be able to show their needs or feelings using their body or facial expressions. They may still sense what is going on around them and be able to respond with basic gestures, such as smiling or hand squeezing. They may also become distressed if they hear harsh noises or commotion.

What is 'Namaste Care'?

If the person is living in a care home and has very advanced symptoms, some care homes offer ‘Namaste Care’. This offers social and emotional support through activities that still have meaning for the person or stimulate their senses.

Activities might include:

• gentle massage
• washing and moisturising the person’s face
• brushing their hair or
• playing their favourite music.

Talk to the care home about whether they are able to provide this kind of care.

What physical needs might a person have at end of life?

The person is likely to become less physically able as their dementia progresses, and particularly as they approach the end of their life. This can be for several reasons, including other health conditions.

Dementia will also often affect the person’s ability to eat, drink, move around and sense things properly. They may need a lot more help at mealtimes, when they get dressed, or when they go to the toilet.

There are steps that can be taken to help meet these needs and to make sure that the person is as comfortable as possible.

Pain at end of life

People with dementia are at risk of pain from a wide number of conditions. These include arthritis, pressure ulcers (bedsores), urinary tract infections (UTIs) and constipation, or other diseases that cause pain such as cancer.

Some people assume that people with dementia are less able to feel pain, but this is not true. A person with advanced dementia might not always be able to let someone know they are experiencing pain. They may not recognise where pain is coming from or why it is happening.

What are the signs of pain in a person with dementia at end of life?

Different people react to pain and discomfort in different ways. Carers and health and social care professionals should always look out for a wide range of signs, including:

• behaviour – being distressed, agitated, irritable, tearful, defensive, or unable to sleep
• facial expressions – looking sad, frightened or grimacing
• body language – being tense, rocking, fidgeting, clenching fists, or pulling at the part of their body that hurts
• vocal sounds – shouting out, screaming, swearing or moaning
• bodily changes – changes in breathing, high temperature, sweating or looking very pale.

If the person appears to be in pain or discomfort, it is important to ask them and not just assume that they are. 

If communication is difficult, a healthcare professional can use a pain assessment tool to estimate their level of pain. This involves recording information about the person’s appearance and behaviour, such as the signs listed on this page. 

Knowing the person well can also really help to identify behaviour that is unusual for them. You might recognise things that they tend to do when they are in pain, such as having a certain look on their face or becoming very withdrawn. 

How can a person in pain at end of life be supported?

It’s important to look for possible causes of discomfort related to the person’s situation or surroundings. For example:

• are they hungry or thirsty?
• are they too hot or too cold?
• could they want to use the toilet?
• is their environment calm and supportive?
• could they be anxious or upset for other reasons?

Doctors treating pain may start with paracetamol, which often works well. If this doesn’t relieve the pain then they may try stronger painkillers.

However, these tend to have side effects, such as disorientation, dizziness, drowsiness, slowed breathing or constipation – particularly at higher doses. This is why doctors start with lower doses and then increase them as the person needs more pain relief.

Some people may take regular strong painkillers for conditions such as cancer. If they start to show signs of pain, the dose or type of their painkillers may need to be reviewed. The doctor may either increase the dose or switch the person to a different drug. Doctors will also try to treat any medical conditions that might be causing pain, such as constipation or infections.

There are sometimes ways to make a person comfortable that may also relieve their pain. These can include very gentle exercise, massage and warm packs placed over the area that hurts.

Eating and drinking at end of life

As dementia progresses, people often develop problems with eating and drinking, such as difficulty chewing their food and swallowing safely. 

They may choke on food or saliva as it accidentally goes down their windpipe, and this can cause an infection in their lungs (pneumonia). To prevent this, their food may need to be blended to make it easier and safer to swallow, and drinks or other fluids can be thickened. A speech and language therapist or dietitian should be able to advise on how to do this.

It can be distressing to see that the person is no longer able to eat and drink normally. Try to remember that this is normal for a person approaching the end of their life and that they may not feel hungry if they are very unwell.

Talk to health professionals about how to provide the right food and liquids for the person, taking into consideration their cultural background and what they have said they wanted.

Tube feeding (artificial feeding and hydration)

If a person is struggling to eat and drink enough, and they are unable to swallow safely, you may need to discuss other ways of providing nutrition. The most common way of doing this is tube feeding, using either:

• a nasogastric tube – this goes in through the nose and down into the stomach, or
• a PEG tube – this goes directly into the person’s stomach through a hole in their skin.

Most healthcare professionals now agree that tube feeding is not appropriate if the person’s problems with eating, drinking or swallowing are symptoms of very advanced dementia. This is because tube feeding does not help to make the person more comfortable, or give them a better quality of life or longer life.
 
There are also clear disadvantages. For example:

• fitting a PEG tube means going into hospital, which can be distressing and has its own risks of complications
• the tubes can cause discomfort or sores
• the tubes can become loose, get pulled out or cause an infection.

While it can be very difficult to decide not to feed the person by any means possible, tube feeding is unlikely to help them in any meaningful way.

Any decision about tube feeding should be made with the person’s best interests in mind and healthcare professionals should discuss this with those who know them best.

Mouth care

When a person is eating or drinking less, their mouth can sometimes become dry or sore.

Care professionals should provide regular mouth care, keeping it moist and clean. They may provide sips of iced water or juice, or gently rub an ice cube on the person’s lips, if they can still swallow. They may also apply a balm to keep the person’s lips from becoming cracked and uncomfortable. This might be something you’d like to help with.

Managing infections at end of life

People in the later stages of dementia have a higher risk of getting infections – particularly urinary tract infections (UTIs), infected bed sores or chest infections. These are much more likely to happen if the person is dehydrated, has lost a lot of weight, has swallowing problems or doesn’t move very much.

When should antibiotics be used to treat a person with dementia?

The decision about whether to use antibiotics to treat infections during the later stages of dementia can be a difficult one for doctors.

They have to consider each person’s situation individually, including:

• the benefits of making the person more comfortable by treating the infection
• the risks of drug side effects or other treatment complications
• how easy or difficult it is for the person to take medication
• how likely it is that the person will recover fully if the infection is treated
• the person’s wishes (if known).

It’s important to consider the person’s best interests when they get near to the end of their life. If they have infections that keep coming back, the doctor may talk to you about whether it’s in the person’s best interests to treat future infections – particularly serious ones.

The doctor may point out that sometimes to get treatment, such as medications injected into the vein, the person might need to go back into hospital. This might not be in the person’s best interests if they previously expressed a wish to die as peacefully as possible at home.

Delirium at end of life

What is delirium?

Delirium is when a person’s state of mind suddenly gets worse – often when they are unwell and particularly towards the end of their life.

The person may become disoriented (less aware of where they are or what is happening), and easily distracted. They may become agitated or have difficulty staying connected with reality – for example, having delusions (strongly believing things that are not true) or hallucinations (seeing or hearing things that aren’t really there). Or they may become very withdrawn and unresponsive.

How can I tell if a person at end of life has delirium?

For someone in the later stages of dementia, delirium can be hard to spot. This is because the symptoms of delirium can be very similar to those of dementia. However, the key difference is that the symptoms of dementia tend to come on slowly, over months and years. Delirium comes on in hours and minutes and can vary a lot over the day.

How can delirium be treated for a person at end of life?

Delirium can be distressing to the person and those around them. It is treated in different ways depending on the causes and the person’s needs.

If delirium is being caused by something the medical team cannot treat, they may suggest reducing the person’s distress using drugs that help them to stay calm and reduce their distress. These medications can help to give them a sense of peace at the end of their life.