MDT Minutes: 

management of pain in dementia

Published 14 March 2014

A multidisciplinary approach to managing a patient with dementia who was unable to communicate her experience of pain is described by Karen Harrison Dening and Sharon Scott

KEY LEARNING POINTS

• Pain in dementia patients is often under-detected and under-treated
• Observational tools, alongside careful assessment and history, may offer insight in the nonverbal patient
• Simple analgesia can be very effective but should be stepped up if needed

INTRODUCTION

The population of Europe and other developed nations is ageing. By 2020, it is predicted that about one in four of the population of the UK will be aged over 60, with predictions that in Japan this will rise to one third.1 This has led to an increase in the numbers of people living long enough to develop the multiple comorbidities associated with old age, in particular dementia. There is widespread evidence that older people, especially those with dementia, have inequitable access to palliative care, and distinct barriers to adequately meeting their needs have been identified.1,2One such barrier, common in the symptom burden of many comorbid conditions, is that of the effective recognition and management of pain.

Pain is common in people with dementia and is often under-detected and under-treated.3 While there is no consistent evidence to suggest that their pain experience is less intense, people with dementia tend to have difficulties in communicating that they are in pain and interpreting pain signals, site and intensity. This can often manifest as behavioural change such as agitation, distress, social withdrawal, depression or resistive behaviour.3,4 This may often be interpreted as signs and symptoms of dementia rather than having a physiological basis.

This Multidisciplinary Team (MDT) Minutes article describes a case of pain in dementia and how each member of the MDT contributed to the overall management of the patient.

CASE REPORT

Daphne was diagnosed with dementia five years ago; four months after the death of her husband, George. George had been supporting Daphne for some time prior to his death, perhaps aware of her failing memory and functioning, ‘hiding’ the reality of the situation from his two daughters. It was not until George died that Daphne’s poor memory and cognition became evident to the rest of the family. She was diagnosed as having a mixed dementia (Alzheimer’s disease and vascular dementia) by the local memory assessment clinic. No further support was deemed necessary at that time and Daphne’s daughters both aimed to support her in remaining at home for as long as possible.

Daphne was admitted to a care home when her daughters were unable to meet her ongoing care needs
©luna4/iStock/Thinkstock

Daphne’s physical health had been deteriorating over the last year with poor circulation in her legs, resulting in her scratching and often breaking the skin; she was starting to have multiple falls and occasions of urinary incontinence which led to the irritated skin on her legs becoming inflamed and infected. The risk associated with her remaining in her own home became so pressing that her daughters felt unable to continue to support their mother as well as manage their own homes and families. Daphne was admitted to a care home. As her needs were not deemed to warrant any specific or continued nursing intervention, she was admitted to a small residential home in her locality. Her dementia had progressed during this time and Daphne was diagnosed with advanced dementia with associated limited speech as a barrier to communication.

Daphne developed bilateral leg ulcers from ankle to knee. The district nurses were visiting to change dressings and manage the exudate every two to three days. Daphne was becoming increasingly resistive to care, especially during the delivery of personal care and when the district nurses were changing the dressings on her legs. Daphne’s youngest daughter, Claire, who lived closest, was called frequently by the care staff to come and offer support at these times, as Daphne could be very agitated and displayed both physical and verbal aggression.

The Admiral Nurse (Box 1) was supporting both Claire and her sister, Deborah, in coming to terms with their mother’s transition into the care home. Claire mentioned the current problems the care home staff and district nurses were having with her mother and the Admiral Nurse suggested that she visit with her the next time she was called.

BOX 1: ADMIRAL NURSING

Admiral Nurses support families affected by dementia. They provide family carers (and generalist colleagues) with the tools and skills to best understand the condition, as well as emotional and psychological support through periods of transition. Uniquely, Admiral Nurses join up the different parts of the health and social care system and enable the needs of family carers and people with dementia to be addressed in a coordinated way. Admiral Nurses work in partnership with colleagues and services to deliver best practice in dementia care. For more information, see www.dementiauk.org/what-we-do/admiral-nurses/

MDT MINUTES

Admiral Nurse

Many people with mild-to-moderate cognitive impairment are able to self-report pain, but this ability decreases with disease progression,5 and Daphne was unable to do so. The Admiral Nurse introduced the daughters, care staff and the district nurses to how they could use observation and a validated observational pain scale such as the PAINAD tool .6 She explained that managing pain in a person with advanced dementia requires careful assessment for possible underlying causes when they are unable to verbalise; including medical history and comorbid conditions that can be painful, clinical examination, observation of behaviours (both at rest and during movement) and discussion with family members or staff who know the person well.5 Daphne had bilateral leg ulcers which are known to be very painful. Using the PAINAD tool (Figure 1) during the dressing change clearly highlighted painful behaviour, for example, facial grimacing, loud groaning and striking out at staff. The Admiral Nurse suggested the GP prescribe a trial of paracetamol 1g four times daily, as Daphne was prescribed this only on an as required basis; being unable to verbalise pain in a conventional way, she was not given any. She asked the care staff to continue to monitor Daphne and periodically reassess her pain using the PAINAD tool to see if the regular medication had had an effect.

Figure 1. PAINAD tool6

ITEMS	0	1	2	SCORE
Breathing Independent of vocalisation	Normal	Occasional laboured breathing. Short period of hyperventilation	Noisy laboured breathing. Long period of hyperventilation. Cheyne-stokes respirations.
Negative vocalisation	None	Occasional moan or groan. Low- level of speech with a negative or disapproving quality	Repeated troubled calling out. Loud moaning or groaning. Crying
Facial expression	Smiling or inexpressive	Sad, frightened, frown	Facial grimacing
Body language	Relaxed	Tense. Distressed pacing. Fidgeting	Rigid. Fists clenched. Knees pulled up. Pulling or pushing away. Striking out
Consolability	No need to console	Distracted or reassured by voice or touch	Unable to console, distract or reassure
TOTAL*

GP

Initially paracetamol had a good effect and Daphne was less resistant to care and appeared calm when dressings were changed. However, lately the district nurses and care staff were becoming increasingly concerned as Daphne appeared to be deteriorating. She was refusing to eat and had lost weight, was becoming increasingly withdrawn and often tearful when her dressings were changed. The GP visited as requested and on examination found a cachexic, frail lady with infected and deteriorating leg ulcers. Antibiotics were prescribed, but due to concerns about side-effects, the GP would not prescribe stronger pain relief. He suggested that it was now time for the palliative care team to be involved to give support and advice on the best way forward.

Palliative care nurse specialist

The palliative care nurse reviewed Daphne at the care home with the staff and her two daughters. She concluded that Daphne’s condition had deteriorated and that she would now need palliative care advice and support. She explained that the deterioration could be due to a number of reasons; ongoing chronic leg ulcer infections and pain could be contributing to her poor appetite, weight loss and low mood. She recommended a 5 microgram/hour buprenorphrine* patch over seven days to control her background pain and morphine sulphate 2.5mg oral solution 30 minutes before dressing for incident pain. The palliative care nurse spoke to the GP and explained that side-effects could be minimised with a gradual increase in analgesia, the prescribing of a laxative to prevent constipation and an antiemetic available if required.

Daphne improved with the new medication; she became more interactive, started eating again and there were no more tears during dressing changes. The MDT continued to work together to support Daphne and her daughters until she died a few months later.

TREATING PAIN IN DEMENTIA

Common causes of pain in people with advanced dementia include pressure sores, undetected fractures, poor dentition, awkward positioning in chair or bed and arthritis. 

Treating pain in this population requires a stepped approach. 

Depending on the cause, non-pharmacological interventions may be helpful, particularly where there is a musculoskeletal aetiology. 

This may involve careful positioning and repositioning, provision of optimal seating or specialist beds, physiotherapy, massage, heat or cold. 

Simple analgesia such as paracetamol or NSAIDs can be very effective; however, NSAIDs should be used with caution and high-dose, long term NSAID use should be avoided.7 

If these are ineffective then stronger analgesia such as opioids should be considered.7

 Side-effects can be managed. An important recent study demonstrated how this stepwise approach to the management of pain significantly reduced agitation in residents of nursing homes with moderate to severe dementia.8

CONCLUSIONS

Pain in dementia is common but is rarely complex or difficult to control. It does, however, need accurate assessment and ongoing review of treatment interventions. Observational pain assessment tools are an effective way of achieving this especially when communication is limited. Optimum symptom control may require an MDT approach with various disciplines and practitioners pooling their knowledge resources to improve outcomes.

• Karen Harrison Dening is director of Admiral Nursing, Dementia UK. Sharon Scott is nurse consultant, Dementia Care

* Transdermal buprenorphine (BuTrans®/Norspan®) is licensed for non-malignant moderate chronic pain when an opioid is necessary for obtaining adequate analgesia.

References

1. Davies E, Higginson IJ (eds). Better Palliative Care for Older People. World Health Organization, 2004.
2. Sampson EL, Gould V, et al. Age and Ageing 2006;35(2):187-189.
3. Scherder E, Herr K, et al. Pain 2009;145(3):276-278.
4. Sampson EL. British Medical Bulletin 2010;96:159-174.
5. Herr K, Coyne PJ, et al. Pain Management Nursing 2006;7(2):44-52.
6. Warden V, Hurley AC, et al. Journal of the American Medical Directors Association2003;4(1):9-15.
7. AGS Panel on Chronic Pain in Older Persons. Journal of the American Geriatric Society 1998;46(5):635-51.
8. Husebo BS, Ballard C, et al. British Medical Journal 2011;343:d4065.