Pain in advanced dementia

This section gives some ideas for what you can do to recognise pain in people living with dementia, and what you can do to help them better manage pain.

Pain is one of the most common symptoms that people with dementia experience. However, often it is poorly recognised and undertreated in dementia. The main reason for this is that, as dementia progresses, the person’s ability to communicate their needs becomes more difficult.

Pain is what the person says hurts.

International Association of Hospice and Palliative Care.

What is pain?

The International Association of Hospice and Palliative Care defines pain defined as ‘an unpleasant sensory and emotional experience associated with actual or potential damage to the body’ (1979). For example, a burn to the hand from an iron or a broken bone from a fall. Pain is a very personal thing. This means that – as quoted above – ‘pain is what the person says hurts’ it is what the person describes and feels as pain. No other person can experience the pain, know what it feels like or how it really affects the person physically and emotionally.

Why do people with dementia receive poor pain relief?

There are a number of reasons why people with dementia typically receive poor pain relief. The most obvious is that the person with dementia may lose the ability to tell us they are in pain.

Additionally, carers and care staff often do not recognise when a person is in pain or do not know how to help. People may think that some behaviours are due to ‘the dementia’ rather than to pain. For example, calling out for help repeatedly. See the features in the Difficult situations section. Some believe that people with dementia do not experience pain or that because their memory is so poor they forget the experience.

Common causes of pain in dementia

People with dementia are usually older and therefore many of the causes of pain will be the same for all older people:

People often experience pain when a part of the body is moving. For example, a person is most likely to experience pain when they are being helped to turn in bed, get dressed or undressed or when a wound dressing is being cleaned or removed.

How can we know if the person is in pain?

What medication can be used to relieve pain in advanced dementia?

One of the most common and effective medicines to relieve pain in advanced dementia is paracetamol. Ensure medication is given as prescribed. This can be when it is needed – if pain is constant give it regularly. Paracetamol can be given one hour before someone is helped to move or before a dressing needs to be changed.

Other medications to relieve pain include antibiotics to treat infection, laxatives to relieve constipation, antacids (such as Gaviscon) to help indigestion, and peppermint water to relieve wind-type pain.

You can ask a range of professionals for advice on pain management: a tissue viability nurse, palliative care or district nurse, physiotherapist or massage therapist, or a GP or pain specialist team in your local area.

Other ways to tackle pain, without medication

Gentle exercises to relieve stiff joints and massage to relive tight muscles can help, but seek advise from a physiotherapist on the best and safest techniques to use.

Some people benefit from using heat pads. However, be careful that they do not irritate, are too hot or used for too long.

Help position the person so that they are comfortable in bed or in a chair. Use an air mattress and air cushions to relieve pressure.

Help support the person with good mouthcare and oral hygiene, and ask a dentist for advise where there are problems.

Distraction, relieving boredom, a calm, comfortable environment, social contact, treating anxiety and/or depression can all help to alleviate pain.


All SCIE resources are free to download, however to access the following downloads you will need a free MySCIE account:

Available downloads:

  • Activity: Pain in advanced dementia
  • What the research says: End of life care (2013)