Managing joint painIntroduction
Pain assessment tools for patients with dementia
What can be used to manage pain?
Last Few Days of Life

This is part two of a two part article. Part one can be read here.



The number of people living with dementia is growing, affecting one in 141 of those aged 65 years and over. By 2025, this number is expected to increase by 40%.1 The older population has 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 longterm 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.


Pain assessment tools for patients with dementia

A key principle in establishing the nature and cause of pain is to rely on how the patient reports the pain. However, self-reporting is difficult for those with dementia who may not be able to verbalise their pain experience.3 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.7 FPS-R is a selfreporting 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.7


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.8 There is good internal consistency between those utilising the PAINAD scale and it has proved to be reliable.8 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) consolability9 as indicators of pain (Table 1).


3. The Mobilisation-Observation- Behaviour-Intensity-Dementia Scale (MOBID-2)

This scale, intended for use by health professionals, allows an assessor to guide the patient through five mobilisation activities.10 Pain behaviour is assessed for during the suggested movements by observing: (i) facial expression, (ii) defence actions and (iii) pain noises.10 Pain location and intensity of pain is also recorded.10


4. The Abbey Pain Scale

The Abbey Pain Scale was created for healthcare professionals to assess pain in advanced dementia.11 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.12 Each domain has a grade of severity from absent to severe (0–3); a total score of 3 or above indicates pain.12 A summary of the main characteristics of the scales discussed is shown in Table 1.


Assessment considers Specific elements to assess Time to complete Score/rating
Breathing Laboured/noisy breathing
Cheyne-Stokes respiration
5 minute observation + assessment 0,1 or 2 for each criteria
Negative vocalisation Moaning, groaning, calling out, crying   Total score (max 10)
Facial expression Frowning, grimacing    
Body language Tense, fidgeting, pacing, rigid, striking out    
Consolability Reassured by voice/touch, inconsolable    
Whilst performing five guided movements: Observe for: 6-8 minutes including:
2 minute initial observation
Pain intensity graded from 0-10 for each movement and an overall pain intensity score 0-10
(1) Opening both hands Pain noises
Ouch, groaning, grasping, screaming
(2) Stretching arms towards head Facial expression
Grimacing, frowning, tightening mouth, closing eyes
(3) Stretching and bending both knees and hips Defence actions
Freezing, guarding, pushing, crouching
(4) Turning in bed to both sides      
(5) Guide to sit at bedside      
Abbey Pain Scale
Vocalisation Whimpering, groaning, crying 1 minute Absent (0),
Facial expression Tense, frowning, grimacing, frightened   Mild (1),
Change in body language Fidgeting, rocking, guarding, withdrawn   Moderate (2),
Behavioural change Increased confusion, refusing to eat, alteration in usual patterns   Severe (3) for each criteria
Physiological change Temperature, pulse, blood pressure, perspiring, flushing, pallor    
Physical changes Skin tears, pressure areas, arthritis, contractures, previous injuries   Total score (max 18)


What can be used to manage pain?

Research into pain medication for older patients with dementia is currently limited.6,12 The European Association of Palliative Care advises that pain should be managed holistically;13 there should be an emphasis on both pharmacological and non-pharmacological treatment.13,14 However, pharmacological interventions are more commonly used;15 non-pharmacological measures such as re-positioning or physiotherapy are typically overlooked.15 Reflexology, reiki and music should also be considered;3 however, further research is needed.3

With regard to pain management in patients with dementia, the clinical challenge is often in balancing benefit over the risk of treatment. With increasing age, patients are more likely to have comorbidities such as renal disease; this can influence which opioid is prescribed and limit the use of non-steroidal anti-inflammatories. Transdermal patches may be useful in patients with cognitive impairment increasing medication compliance and reducing tablet burden. There is also increasing interest in the use of topical preparations lidocaine and capsaicin for neuropathic pain, which may be of benefit to this group of patients.16

Although there are no guidelines specifically for pain relief for patients with dementia, recommendations are outlined in Table 2 based on guidance from the British Geriatrics Society, NICE and the World Health Organisation.17,18,19

A randomised trial, specifically focusing on pain treatment in an elderly population with dementia, demonstrated that a step-wise pain treatment protocol, adapted to the patient’s needs was successful in significantly alleviating pain.20 A simple three step analgesic pain ladder was utilised: (i) paracetamol (less than 4g), (ii) morphine prolonged release/low dose buprenorphine patch and (iii) pregabalin for suspected neuropathic pain.20 Paracetamol proved to be a good first-line choice in patients with dementia and was associated with no adverse events.20 Physical function improved in those prescribed paracetamol.20 This trial illustrated that a simple stepwise protocol for analgesia was beneficial and tolerated well.


Step 1: Paracetamol
  • Should be first-line treatment for acute or chronic pain in older people, particularly for musculoskeletal pain
  • NICE recommend using in osteoarthritis and lower back pain
  • Adverse effects are rare
  • Titrate to a maximum dose of 1g four times a day before changing to an alternative or combination of analgesics
  • Can combine with NSAID or weak opioid
Step 2: Paracetamol +/- NSAID
Non-Steroidal Anti-Inflammatory Drugs (NSAID’s)
  • Useful for musculoskeletal pain
  • Use with caution in elderly patients
  • Prescribe with a proton pump inhibitor
  • Can exacerbate chronic renal failure, particularly if patient also takes diuretics or ace inhibitors
  • Regularly monitor for gastrointestinal, renal and cardiovascular side effects and drug interactions
  • Topical NSAID preparations may also be useful
Step 3a: Paracetamol +/- NSAID and/or weak opiate
Weak Opiates
(codeine, dihydrocodeine)
  • Can be considered for moderate pain, particularly if unable to take an NSAID
  • Need to consider side effects such as constipation
  • Can be variation in how codeine is metabolised
  • Can use a combination e.g. Co-codamol 30/500mg rather than separately
Step 3b Paracetamol +/- NSAID and strong opiate
Strong Opiates
(morphine, oxycodone)
  • For moderate or severe pain, particularly if function or quality of life are affected
  • Anticipate side effects and consider prevention (ie. anti-emetics/stool softeners or stimulants)
  • Oxycodone is a useful second line strong opioid for patients who have not tolerated morphine and renal impairment
Transdermal Preparations
  • Should not be started in unstable pain or in the last days of life as have a long duration of action and titration period
  • Useful in patients who are less compliant or struggling with oral medication
  • Both preparations are safer than morphine in patients with renal impairment.
  • Consult a dose conversion chart or seek advice from the local palliative care team
  • Low dose buprenorphine patch may be useful in patients who are opioid naïve
Neuropathic pain
Tri-cyclic antidepressants
  • Should be initiated at low dose (eg. 10mg amitriptyline) and increased cautiously in the elderly due to side-effects
  • Nortriptyline may have less anticholinergic side effects than amitriptyline
  • Gabapentin or pregabalin should be initiated at a low dose and titrated slowly according to response
  • Dose reduction necessary in renal impairment


Last few days of life

NICE recommends that a palliative care approach is advisable for patients with dementia.14 The GSF prognostic indicator guidance can help generalists identify when palliative care should be involved.21 When patients are no longer able to swallow, as part of the natural dying process, it is important that their pain control is still optimised and subcutaneous medication may be needed with the use of a syringe driver. The specialist palliative care team can help ensure that symptoms continue to be controlled.



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 which informs analgesia provision and choice. The PAINAD could potentially be used but is not currently validated for use by non-healthcare staff.16 Developing guidelines on prescribing analgesia for patients with dementia would aid GPs, ensuring that patients have their pain assessed and managed effectively. This is critical, as the number of people living and dying with dementia continues to increase.5


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



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