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Guidance on the recognition, assessment, and management of pain in people who have dementia

This guideline was developed by a multidisciplinary expert panel: Rasmussen J et al with the support of a grant from Napp Pharmaceuticals Ltd. See bottom of page for full disclaimer

  • In people with dementia the presence of pain can have many consequences to the individual themselves including:
    • anxiety
    • depression
    • impaired appetite
    • memory loss
    • reduced mobility/self-care
    • sleep disturbance
    • weight loss
    • negative impacts on behaviour, for example increasing aggression, agitation, calling out, delirium, resistant behaviour
    • reduced socialisation

Recognition of pain

  • If the person with dementia has no memory of pain, ‘pain’ can be a new and frightening experience that results in unwanted behavioural disturbances
  • Pain in people with advanced dementia will most likely be reported by a third party. The presence of comorbid physical illnesses causing pain or other acute causes e.g. decayed teeth, ear problems, or ingrowing toe nails, may be overlooked in people in residential care
  • Where pain is suspected a trial of treatment for physical pain should be initiated first
  • Pre-existing mental health problems may complicate the presentation and evaluation of pain; existing treatment, even antipsychotics, should be continued
  • Indicators of pain in a person with dementia are:
    • a change in activity, behaviour, facial expression or mood; more withdrawn or quieter than normal, or refusal of food
    • disturbed behaviour—trial of analgesics is recommended before specific treatments for aggression

Improving the recognition and management of pain in people with dementia

  • Improving the recognition and management of pain in people with dementia, requires a holistic approach involving regular checks that includes:
    • a general review of dementia and also physical co-morbidities, psychosocial factors, and behavioural change
    • input from people who are in regular contact with the patient including family, carers, and other healthcare professionals
    • a standardised approach for pain assessment that includes:
      • an appropriate pain scale to grade the type and site of pain
        • use of charts or visuals such as the Wong-Baker FACES® Pain Rating Scale (www.WongBakerFaces.org), or a visual analogue scale (VAS)
    • use of appropriate language, e.g. words that are simple to comprehend such as ‘pain, sore, and hurt’
    • consideration of cultural, religious, or ethnic difference
  • Following the identification of pain the patient should have:
    • a therapeutic trial of a pain intervention with the response monitored
    • regular reviews and assessment—increased agitation or changes in mood (more withdrawn/quiet) may indicate pain is still a problem
    • a management plan for the pain

Algorithm for the recognition, assessment, and management of pain in people with dementia

Assessment of pain

  • Formal assessments should be conducted at least annually to evaluate the effects of treatment and should be undertaken using the same tool/scale so that progress can be monitored
  • To assess the site and characteristics of pain:
    • ask the patient to point to the area that is painful
    • assess the intensity
    • a ‘pain map’ can be helpful to define the location, and extent of pain
  • In patients with mild to moderately impaired cognition or communication skills, verbal and numerical rating scales are best:
    • one scale may be more suited for a particular person with dementia than another, assess the patient with more than one tool to identify the most appropriate scale
    • the use of a hearing aid and/or glasses may help the patient communicate
    • assistance from a speech and language therapist may help to facilitate the self-reporting of pain especially in those with severe impairment
    • self-report assessments scales should be offered in a format that is appropriate for each patient’s ability to communicate
  • There are a selection of pain assessment tools/scales:
    • Abbey
    • DOLOPLUS2
    • Pain Assessment Checklist for Seniors with Limited Ability to Communicate (PACSLAC)
    • Pain Assessment in Advanced Dementia (PAINAD)
    • Disability Distress Assessment Tool (DisDat)

Management of pain

  • The same principles of management of pain apply equally to patients with and without dementia and involves both pharmacological and non-pharmacological approaches

Considerations

  • Many considerations apply including:
    • type of pain (neuropathic, nociceptive or mixed form)
    • cause of pain (musculoskeletal, visceral, cancer, neuropathic)
    • characteristics of pain:
      • short-acting, pulsatile drugs for acute pain
      • sustained-release drugs for chronic pain
    • risk:benefit assessment with specific considerations for people with dementia:
      • falls and/or postural hypotension
      • sedation
      • renal impairment
    • medicine optimisation, e.g. cost versus clinical effectiveness, patient-centred, realistic outcomes, appropriate formulation (buccal, oro-dispersible, transdermal)
    • proactive management of potential side-effects of opioids, e.g. pain relief/laxatives and anti-emetics
    • formulation:
      • alternatives to oral formulations should be considered where issues with compliance are likely and where there is evidence of dysphagia. Use of suppositories may precipitate agitation
  • After any intervention the patient should be reviewed to assess the impact of treatment and whether adjustments in drug or dosage are required. Timing of this review will depend on:
    • the intensity and type of pain
    • the treatment prescribed
    • whether the treatment needs to be titrated to the therapeutic dose
    • emergence of side-effects
    • failure to respond—when referral for specialist advice should be considered
  • The following therapies may be beneficial:
    • acupuncture
    • animal therapy
    • aromatherapy
    • cognitive behaviour therapy
    • exercise
    • music therapy
    • physiotherapy
    • reflexology
    • TENS (transcutaneous electrical nerve stimulation)

Pharmacological interventions

  • When prescribing a pharmacological treatment, the following principles should be followed:
    • ‘start low and go slow’
    • analgesics should be titrated to response rather than dose
    • people with dementia have increased sensitivity to side-effects of drugs
    • the least invasive route of administration should be chosen; transdermal or topical medications are of particular value; in patients with swallowing difficulties a patch or liquid formulation is preferred
    • understanding the precipitants of pain often allows analgesia for acute pain to be used pre-emptively, for example 15–20 minutes before painful dressing changes
    • try to match the duration of action of the drug/formulation to the duration of the pain, i.e. long-acting drugs, perhaps in patch form, to prevent the re-emergence of chronic pain, short-acting drugs for brief pain
    • most people with dementia can be treated at STEP 1 of the WHO pain ladder and very few will need a weak (STEP 2) or strong (STEP 3) opioid

Non-opioid treatments

Paracetamol

  • A therapeutic trial of paracetamol should be considered first-line in everyone with acute or chronic pain unless contraindicated. It is available in a variety of formulations; the maximum daily dose is 4 g
  • A smaller dose limit (3g/24hrs) may be needed for patients who are cachectic, have advanced alcoholic or other liver disease, or severe malnutrition. Dose interval should be over 6 hours if the estimated glomerular filtration rate is less than 30ml/min

Other options

  • Antidepressants
  • Antiepileptics (anticonvulsants)
  • NSAIDs
  • Other classes

Opioid treatments

  • The following principles should be followed:
    • treatment will need to be individualised according to the type of pain experienced
    • start at the lowest recommended dose. If it is necessary to step up treatment, the recommendations in the WHO pain ladder should be followed
    • proactively manage common side-effects especially constipation and/or emesis
    • review treatment regularly, especially in people with advanced dementia

Different opioid formulations

  • Liquid formulations are useful in many dysphagias but thin liquids may be risky in people with dysphagia of neural origin
  • Oro-dispersible formulations do not need to be swallowed but need a moist mouth for absorption. They should be avoided in someone who cannot control their swallow as they may be inadvertently aspirated
  • Patches can greatly aid adherence as they only need to be changed daily or every few days. However, fever may increase absorption and the patches may not adhere properly if there is heavy sweating
  • Suppositories are a useful way of giving transmucosal medication (i.e. rapid absorption). Uncomprehending patients may find their use disturbing
  • Syringe-driven treatments allow a constant dose of medication to be administered subcutaneously over 24 hours, but require nurses trained in their use to administer and supervise

Initiating treatment

  • Moderate/severe pain:
    • dihydrocodeine 30mg every 4–6 hours
  • Severe pain:
    • starting dose of morphine 5–10mg every 4 hours then adjust the dose according to response. Once the pain is controlled a sustained-release formulation can be prescribed that provides the same daily dose

Combination treatment

  • Many patients may benefit from combination therapy using drugs that have additive or synergistic analgesic effects. Depending on the expertise of the GP, decisions about drug substitution or withdrawal may require referral for specialist advice

Opioid conversions

  • Fentanyl 25µg/hr=60–100mg/day oral morphine=buprenorphine 35µg/hr
  • Recommended starting dose of transdermal buprenorphine is 5µg/hr≈10mg/day oral morphine

Breakthrough pain in patients already on opioids

  • Sustained-release formulations (including patches) augmented with additional short-acting medication can be given as needed
  • Sublingual and intranasal fentanyl citrate preparations have a quick onset and offset of action and are also available for short-lived breakthrough pains. Such preparations must only be used in people already on significant doses of strong opioids as otherwise they can cause fatal respiratory depression. These formulations should NOT be used for the occasional situation

Dysphagia/refusal of oral medication

Alternative formulations are available for people at risk of dysphagia or who refuse to take oral medications. These are oro-dispersible, liquids, syringe-driven treatment, patches, or suppositories

Minimising side-effects and optimising analgesia

  • Opioid treatments can be switched in order to minimise adverse effects or improve analgesia.This should be done under guidance from a specialist

Late-stage dementia

  • Pain relief for arthritis, contractures, spasticity, and/or pressure sores is more commonly needed in the later stages of dementia as is treatment for constipation, dyspepsia, dysphagia, hydration, urinary tract infections, and chest infections. Pressure sores respond to transdermal opioid treatment. Turning the patient regularly as well as the use of a special mattress may also help reduce pain and discomfort. Spasticity is treated more effectively with benzodiazepines (BZDs*) or baclofen than with opioids

* BZDs should not be prescribed in earlier stages of dementia because of the increased risk of falls and cognitive impairment.

Referral

  • The point for referral will depend on the healthcare professional, their expertise, and local services. Patients may be referred to psychiatry, palliative care, geriatrics, speech and language therapy (SALT), and physiotherapy departments
  • Referral is appropriate for:
    • any unusual cause of pain
    • specialist pain management advice
    • anything that is beyond the expertise of the treating healthcare professional
Opioid treatments suitable for use in people with pain in dementia
Buprenorphine
  • Available as oral (sublingual), injectable and sustained-release transdermal patch formulations
  • Longer acting and may have fewer side-effects than morphine
  • No specific dosage adjustment is necessary in patients with renal impairment
  • Concern about antagonist effect countering strong opioids is not justified at conventional doses
Codeine
  • Available as an oral formulation
  • Codeine is a pro-drug, which needs to be metabolised before it exerts its analgesic effects. Patients vary considerably in their ability to metabolise codeine—5–10% of patients are rapid or ultra-rapid metabolisers, while 5–10% are poor metabolisers—so effects are unpredictable
Dihydrocodeine
  • Available in sustained-release formulations; dose adjustment is limited by adverse effects
  • Provides a more predictable response than codeine as there is less inter-individual variation in metabolism
Fentanyl
  • Available in a range of formulations, including a sustained-release transdermal patch
  • Should only be used for severe pain and only once analgesia has been stabilised
  • Has a long duration of action, so side-effects will take a long time to resolve if discontinued
Morphine
  • The standard opioid analgesic, available in a range of short-acting and sustained-release formulations and strengths to allow for dose titration
  • Available as an injection that can be given subcutaneously, intramuscularly, and intravenously
  • Generally safe for most patients, however, dosage should be reduced in moderate to severe renal impairment
Oxycodone
  • Available as short- and long-acting oral formulation as well as injectable
  • Primarily metabolised by CYP3A4, with negligible amounts metabolised by CYP2D6
  • May be useful for patients who cannot tolerate morphine
Tramadol
  • Available as oral, oro-dispersible, and injectable formulations. The latter can be given subcutaneously, intramuscularly, or intravenously
  • This should not be used first-line due to an increased risk of seizures, sedation, and constipation with use. If it is decided to prescribe this drug, not all patients will tolerate treatment and care is needed. In particular, tramadol should not be prescribed with SSRIs
  • Metabolised by CYP2D6, resulting in unpredictable effects in some patients
There is no clear evidence that one opioid is more effective than any other in terms of pain relief. Morphine is the standard analgesic against which other opioids are measured.
SSRIs = selective serotonin reuptake inhibitors

about this working party guideline…
sponsor— This guideline has been developed by MGP Ltd, the publishers of Guidelines, and the Working Party was convened by them. Napp Pharmaceuticals Ltd was able to recommend experts for the working party group and comment on the scope and title, with final decisions resting with the Chair. Napp Pharmaceuticals Ltd had the opportunity to comment on the technical accuracy of this guideline but the content is independent of and not influenced by Napp Pharmaceuticals Ltd.
working party members— Jill Rasmussen (Chair, General Practitioner), Richard Foskett (General Practitioner), Jonathan Mason (Clinical Adviser, Medicines, NHS England), Victor Pace (Palliative Care Consultant), Peter Passmore (Professor of Ageing and Geriatric Medicine), Mick Serpell (Consultant in Anaesthesia and Pain Management)
further information— call MGP Ltd (01442 876100) for a copy of the full guideline
Full declaration of interest statements for all group members are available on request. May 2014

First included: June 2014.