Pain management in patients with dementia is challenging. Although selfreporting is considered to be the gold standard for pain assessment, patients with dementia can find it difficult to verbalise their pain due to memory problems and communication difficulties.
This is part one of a two-part article. Part two can be read here.
The number of people living with dementia is growing, affecting one in 14 of those aged 65 years and over.1 By 2025, this number is expected to increase by 40%.1 The older population have increased comorbidities and so are more likely to experience pain from conditions such as osteoarthritis, peripheral vascular disease and cardiac problems.2,3 The frequency of joint pain in those older than 85 years has been reported to be as high as 63%;4 therefore, it is not surprising that patients with dementia have problems with pain. The prevalence of pain for these patients in long-term community care settings can be as high as 76%.5 Patients with advanced dementia tend to be more susceptible to pain caused by pressure sores, injuries from falls and infection.3 Consequently, managing pain in this group of patients is a significant issue and yet it is undertreated.3
Pain can be particularly distressing for those with dementia; loss of insight means that pain may not be understood or rationalised.6 Each time pain is experienced, it can feel like the worst pain ever, as previous pain experience is not recalled. Pain not only affects the patient’s quality of life but can cause distress for carers; impacting on their emotional and psychological wellbeing. Consequently, treating pain in this population is complex and there are several barriers to overcome if appropriate analgesia is to be prescribed. Understanding these barriers is crucial in optimising pain management.
Training for healthcare staff in recognising pain and providing adequate pain relief to patients in long-term care facilities can be limited.6,7 Pain, although highly prevalent in nursing homes, is often not documented in nursing notes;7 staff are reliant on patients self-reporting their pain.8 This is problematic for patients with dementia who may struggle to verbalise their symptoms. Lack of time to observe patients, particularly in hospital settings, can be a significant issue.8 Inadequate staff continuity can lead to isolated snapshots of what the patient is experiencing,8 rather than the full picture. Establishing a pattern of the patient’s pain is essential if analgesia is to be appropriately evaluated. More accurate pain assessment may come from engaging with family members or carers who know the patient well.3
Pain can be misinterpreted as behavioural disturbance. A positive association between pain and aggression or agitation has been demonstrated in several studies.3,6,7,9,10 Consequently, misidentification of pain can lead to psychotropic drugs being inappropriately prescribed.11 If pain is not successfully treated, behavioural symptoms may mask the underlying issue and exacerbate distress.
A key principle in establishing the nature and cause of pain is to rely on how the patient reports the pain. However, self-report is difficult for those with dementia who may not be able to verbalise their pain experience.3 The American Geriatric Society has identified six key features to observe, when assessing pain (Box 1)12. Such observational features have prompted the creation of assessment tools to identify and grade pain in patients with dementia. Examples of validated tools are outlined below.
1. Pain Severity Scales
Pain severity scales such as scoring pain from 1–10 or tools such as the FACES Pain Scale-Revised (FPS-R) can be utilised.13 FPS-R is a self-report scale whereby the patient points to the face, which most similarly depicts their pain or verbally informs the assessor which face most likely represents their pain.13
Research indicates that the FPS-R may not be effective in identifying pain, even in the early stages of dementia;6 furthermore, although facial expressions help to identify pain, they are less helpful in determining pain intensity.14 Although people with milder cognitive impairment may be able to follow a scale and rate their pain, as the dementia trajectory progresses, the ability to verbally communicate tends to deteriorate. The onus is then on the care provider(s) to observe and assess for pain without having verbal confirmation.
2. The Pain Assessment in Advanced Dementia scale (PAINAD)
The PAINAD scale is one of the most evaluated and effective observational pain tools for use in patients with dementia.15 There is good internal consistency between those utilising the PAINAD scale and it has proved to be reliable.15 The scale is intended for healthcare professionals and assesses five key areas: (i) breathing, (ii) negative vocalisation, (iii) facial expression, (iv) body language and (v) consolability16 as indicators of pain. Patients are evaluated either at rest, during activity, when personal cares take place or after having had analgesia.16 Pain can be regularly monitored and subsequently inform analgesic choice.16
Although PAINAD is practical and flexible, allowing for pain observation during different activity states; it may fail to detect pain if only one mode of activity is consistently assessed. The scoring system allows for pain to be differentiated into mild, moderate or severe categories;16 a score of 2 has been identified as signifying a need for analgesia.17 GPs could potentially utilise PAINAD as part of their patient assessment when seeing patients in the community. One study in a hospital setting demonstrated how 38% of patients with dementia self-reported pain and yet when PAINAD was utilised, pain was detected in 57%.10 This illustrates how structured observational assessment using this tool could be effective in identifying non-verbalised pain. However, although PAINAD is sensitive, it may have a high false positive rate.18
3. The Mobilisation-Observation- Behaviour-Intensity-Dementia Scale (MOBID-2)
The MOBID-2 scale, intended for use by health professionals, allows an assessor to guide the patient through five mobilisation activities.19 Pain behaviour is assessed for during the suggested movements by observing: (i) facial expression, (ii) defence actions and (iii) pain noises.19 Pain location and intensity of pain is also recorded.19 The aim is to capture activity-related pain, so that pain is not overlooked because the patient is resting. When originally tested, the MOBID scale was more effective in detecting pain intensity using these guided movements compared to observation without utilisation of these specific activities.19
The scale is able to reliably capture decreases in pain for patients with advanced dementia;20 providing reassurance that analgesia is working. A reduction in pain score of 3 (from the overall 0–10 point scale) is required to reliably demonstrate an improvement in the patient’s pain.20 However, this pain scale may be more effective in identifying musculoskeletal pain,20 rather than neuropathic pain.20 In practice, although there are only five guided movements, performing these may take some time in patients with impaired cognition; particularly if the assessor is unknown to the patient previously. Furthermore, if carers are helping patients perform these guided movements, they may not be able to fully observe facial expressions, leading to under-recognition of pain.19
4. The Abbey Pain Scale
The Abbey Pain Scale was created for healthcare professionals to assess pain in advanced dementia.7 It has six areas of pain assessment: (i) vocalisation, (ii) facial expression, (iii) change in body language, (iv) behavioural change, (v) physiological change and (vi) physical change.21 Each domain has a grade of severity from absent to severe (0–3); a total score of 3 or above indicates pain.21 The Australian Pain Society has recommended that the assessment should be conducted whilst the patient is at rest and during movement.22 The initial study noted that a high proportion of study participants were prescribed regular analgesia after the scale was introduced,21 suggesting that it was successfully utilised.21 This scale is relatively easy to complete and has reasonable validity.21
However, four out of the six observations rely on assessing for change; therefore, the observer needs to have seen the patient before to infer that a change has taken place. Guidelines advise use of the Abbey Pain Scale for patients with severe cognitive/ communication impairment22 and also propose that more research is needed for further validation.22
|BOX 1 – PAIN FEATURES IN PEOPLE WITH COGNITIVE IMPAIRMENT|
|1. Facial expression: Frowning, grimacing, rapid blinking|
|2. Verbalisations/vocalisations: Sighing, moaning, groaning, calling out, asking for help|
|3. Body movements: Rigid, guarding, tense, fidgeting, pacing, gait changes|
|4. Changes in interpersonal interactions: Aggressive, decreased interaction, socially inappropriate, withdrawn|
|5. Changes in activity patters or routines: Refusing food, sleep changes, increased wandering|
|6. Mental status changes: Increased confusion, crying/tears, increased distress|
|Adapted from The management of persistent pain in older persons (2002). American Geriatric Society Panel12|
Pain management in patients with dementia is challenging. Although self-reporting is considered to be the gold standard for pain assessment, patients with dementia can find it difficult to verbalise their pain due to memory problems and communication difficulties.
Whilst the assessment tools discussed are appropriate for healthcare professionals, the role of family members or informal carers may be integral and more effective in identifying their relative’s pain;8 they may prove more skilled at identifying pain cues.8 An assessment tool intended for carers and relatives could prove helpful in providing a pain narrative that informs analgesia provision and choice.
Dr Anna Williams GPST1, Calderdale and Huddersfield NHS Foundation Trust, Macmillan Unit, Calderdale Royal Hospital, Salterhebble, Halifax Dr Rajeena Ackroyd Consultant in Palliative Medicine, Calderdale and Huddersfield NHS Foundation Trust, Macmillan Unit Calderdale Royal Hospital, Salterhebble, Halifax
Conflict of interest: none declared
1. Alzheimer’s Society. Dementia UK: Update Second edition. [Internet]. 2014 [cited 2017 Feb 15]. Available from: https://www.alzheimers.org.uk/info/20025/policy_and_ influencing/251/dementia_uk
8. Lichtner V, Dowding D, Allcock N, et al. The assessment and management of pain in patients with dementia in hospital settings: a multi-case exploratory study from a decision making perspective. MMC Health Services Research 2016; 16: 427
9. van Dalen-Kok AH, Pieper MJC, de Waal MWM, et al. Association between pain, neuropsychiatric symptoms, and physical function in dementia: a systematic review and metaanalysis. BMC Geriatrics 2015; 15: 49
11. Tan ECK, Visvanathan R, Hilmer SN, et al. Analgesic use, pain and daytime sedation in people with and without dementia in aged care facilities: a cross-sectional, multisite, epidemiological study protocol. BMJ Open 2014; 4: e005757
13. International Association for the Study of Pain. Faces Pain Scale – Revised Home [Internet]. Available from: http://www.iasp-pain.org/Education/Content. aspx?ItemNumber=1519&navItemNumber=577 [accessed 24 January 2017]
15. Ellis-Smith C, Evans C J, Bone AE, et al. Measures to assess commonly experienced symptoms for people with dementia in long-term settings: a systematic review. BMC Medicine 2016; 14: 38. doi: 10.1186/s12916-016-0582-x.
19. Husebo BS, Strand LI, Moe-Nilssen R. Mobilization- Observation-Behavior-IntensityDementia Pain Scale (MOBID): Development and Validation of a Nurse- Administered Pain Assessment Tool for Use in Dementia. J Pain Symptom Manage 2007; 34: 67–80
22. Royal College Physicians, British Geriatrics Society, The Pain Society. National Guidelines: The assessment of pain in older people (8) 2007. Available from: https://www.britishpainsociety.org/static/uploads/resources/files/book_ pain_older_people.pdf [accessed 24 January 2017]