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:

• osteoarthritis (a disease that can affect some or all joints)
• pressure sores
• skin tears
• leg ulcer dressings
• stiffening of joints
• muscle rigidity
• constipation.

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?

• OpenAsk the person directly

  The best thing to do is to ask the person directly. Many people with moderate or even advanced dementia may still be able to provide information on their pain. Keep questions simple, as some people may not understand what you mean when you use the word ‘pain’. You may need to ask questions like 'Is it sore?' or 'Does it hurt?'

  When a person has poor short-term memory they may only be able to tell you if they are in pain at that moment – they may not remember if they had pain five minutes or five hours ago. Asking how severe pain is may also be difficult: ‘Does it hurt a lot?’ or ‘How much?’ may not be helpful, as often the person will not be able to describe how bad the pain is or how often it occurs.

  Be careful not to overload the person. If a person is asked a question again and again that they do not understand, they may become agitated and distressed.

• OpenKnow the person well

  Spend time finding out from relatives, close friends, or care staff that know the person well, what usual signs to look out for when the person is in pain, discomfort or distress. For one person it may be that they shout out; for another, it may be that they become very quiet and withdrawn. Knowing what to expect could make a big difference in your approach.

  Known conditions that could cause pain should be recorded in a safe place that is accessible for staff and easy to read. Conditions could include:

  • arthritis
  • ulcers
  • pressure sores
  • recent injuries
  • mouth pain (caused by gum disease, poor dental hygiene or dentures)
  • fractures
  • a history of constipation
  • chest pain
  • headaches.

• OpenUse a tested tool to assess pain

  A number of different resources are available to help care staff establish whether a person with dementia is in pain, especially if the person cannot tell you in words. One example is the Abbey Pain Tool . The tool asks us to look for other ways in which the person may be letting us know they are in pain, perhaps through screwing up their face or rocking back and forth.

  The Abbey Pain Tool can be used by care staff and suggests six possible signs of pain in a person with dementia:

  1. vocalisations (or making sounds): whimpering, groaning, crying
  2. facial expressions: looking tense, frowning, grimacing, looking frightened
  3. changes in body language: fidgeting, rocking, guarding part of body, withdrawn
  4. behavioural changes: increased confusion, refusing to eat, alteration in usual patterns
  5. bodily changes: raised temperature, pulse rate or blood pressure, perspiring, flushing or looking very pale
  6. physical changes: skin tears, pressure areas, arthritis, contractures, previous injuries.

  Using a tool like this can help in your assessment of the person’s pain. It can guide you to the cause of the pain, its severity, when it occurs and what helps to make the pain better or worse. It will also give you evidence to show a nurse or doctor if the pain is present or gone. If the pain is still present, always inform a doctor or nurse to review the person’s medication.

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.

• Further reading Open

  Abbey Pain Scale: Training videos by NHS Greater Glasgow and Clyde

  NAPP (2014) 'See Change: Think Pain'. A set of resources for Identifying pain in people with dementia

  National Council for Palliative Care (2012) How would I know? What can I do? How to help someone with dementia who is in pain or distress. London: NCPC.

  Pain in people with dementia: a silent tragedy (2014) NAPP Pharmaceuticals Ltd

  Reynish, E (2017) Treatment of pain in people with dementia (blog). The Dementia Centre: University of Stirling

  Schofield, P (2018), The Assessment of Pain in Older People: UK National Guidelines, Age and Ageing, Volume 47, Issue suppl_1, March 2018, Pages i1–i22,

  verywellhealth.com website (2020) 'Causes and Signs of Untreated Pain in Dementia'. Available at https://www.verywellhealth.com/top-tips-on-causes-and-signs-of-un-treated-pain-in-dementia-3573193

  Marie Curie. Web resource: Caring for someone with dementia towards end of life

  Dementia end of life care: Community of Practice (CoP)
  A joint venture between Dementia UK and Hospice UK that brings together practitioners and clinical leaders

• Related pages from this section Open

  • End-of-life care
    • An introduction
    • Pain in advanced dementia
    • Eating and drinking at the end of life
    • End-of-life care and carers needs
    • Care in the last days and hours of life