Practice question

How do I recognise and treat pain appropriately and effectively in a person with dementia?

A tool to help staff understand the management of pain in dementia care uses four simple steps to

recognise it and treat it effectively

A tool to help staff understand the management of pain in dementia care uses four simple steps to recognise it and treat it effectively

Consultant nurse for dementia services Julie Willoughby (back left),
dementia outreach nurse Wonda Heritage (back right), matron Karen
Bowley (front left) and Daryl Leung (front right)

Pain is common in people with dementia but it is often under-recognised and poorly managed (Sampson et al 2015, Closs et al 2016). Inability to communicate verbally has been identified as one of the reasons for this, but this does not negate the possibility that the individual is experiencing pain and in need of appropriate treatment (McAuliffe et al 2012).

Despite the existence of observational pain assessment tools for people with advanced dementia such as the Abbey Pain Scale (Abbey et al 2004), their use is not routine (McAuliffe et al 2012). As a result, pain often remains unrecognised, leading to missed opportunities for appropriate treatment.

Watch: Understanding Pain in Dementia - OUCH Campaign



Symptoms unrecognised

The consequences of untreated pain in people with dementia manifest in various ways, including behavioural and psychological symptoms. These symptoms are often accepted as part of the disease process rather than recognised as an individual’s attempt to communicate an unmet need or problem such as physical or psychological pain.

Although the evidence base has prompted some useful practical guidance (National Council for Palliative Care 2012, Napp Pharmaceuticals 2014), these remain relatively sparse. At the Royal Wolverhampton NHS Trust a person-centred approach called OUCH! (Willoughby 2018) has been developed to help staff understand the management of pain in dementia care. The clear, concise and memorable evidence-based guidance consists of four simple steps to recognise and treat pain appropriately and effectively.

The OUCH! guide

Observe the person with dementia, looking for changes in their behaviour or mood that might include increased confusion, agitation, restlessness, aggression, pacing, shouting out, refusal to eat, low mood or withdrawal.

Understand that this behaviour may be the person’s attempt to communicate that they have unrecognised or untreated pain rather than the dementia itself. A person with dementia will never lose all their ability to communicate but they may lose the ability to communicate verbally in the usual way. Understand the individual’s pain indicators – look for non-verbal cues such as facial expression and body language.

Communicate with the multidisciplinary team, including the person with dementia and their family, to gain a person-centred insight into possible pain indicators. Document the information in their personal information booklet to assist other members of the team involved in their care.

Help! by using an observational pain assessment tool such as the Abbey Pain Scale (Abbey et al 2004), report the likely presence of pain, investigate the cause and treat appropriately using pharmacological and non-pharmacological interventions. Provide regular analgesia in a suitable form and avoid ‘as needed’ prescriptions.

Compassion and dignity

The OUCH! tool has been produced in various formats including posters, pocket guides and video. Its use has raised awareness among staff and family carers and it is being incorporated into training programmes and clinical pathways across the trust. It is also attracting national interest.

Pain is a subjective experience for each individual. How we express that pain can also be personal. Using person-centred communication is vital to recognise the expression of pain and treat the individual with care, compassion and dignity.

Julie Willoughby is a nurse consultant in dementia services at Royal Wolverhampton NHS Trust, Wolverhampton



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