Pain in advanced dementia is common, under-recognised and under-treated.
As a person's ability to communicate reduces, unusual behaviour (e.g. wandering, agitation, shouting or aggression) MAY be a sign of distress or pain.
There are many causes of troubled behaviour in advanced dementia (e.g. anxiety, boredom, unfamiliar surroundings or people, hunger or thirst) which is why it is often difficult to assess whether someone is in pain.
An approach to assessing pain in advanced dementia
- Ask the person simple questions such as 'is it sore' or 'does it hurt'
- Talk to whoever knows the person best - family or carers usually know the behaviour that means the person has pain
- Assess pain at rest or on movement as the cause may become more obvious
- Using a pain assessment tool may be helpful (but not always) for some e.g. the Abbey pain tool. A certain level of understanding is needed to respond.
Questions to consider
- What does their face look like? - Are they grimacing or clenching their teeth?
- Are they rubbing or pulling at a particular part of their body?
- Are they more irritable, crying, groaning, shouting ?
- Body language - are they stiff, rocking, restless or guarding part of their body?
- Are they moving less?
- Do they seem to be seeing things or to be frightened?
Possible causes of pain or distress
- Sore mouth, toothache, ill fitting dentures
- Being lifted or moved in an uncomfortable way
- Difficulty in going to the toilet ? Constipation can be painful and distressing
- Painful joints
- Uncut finger or toenails
- Being in an uncomfortable position or same position for a long time
What can you do for someone’s pain
This depends on the severity of the pain and whether you have identified a cause. To start you could try simple approaches such as changing their position. Touch and massage for aches and pain in the muscles, cold compresses or warmth can help. Consider a trial of simple pain medication such as paracetamol and give this regularly if pain is ongoing. Do review and consider whether the pain relief has helped.
If there is significant discomfort stronger prescribed pain medication will be required.