Symptom Management

What is known

Pain and breathlessness appear to be frequent symptoms in patients with severe dementia: 21–83% have been reported to have pain at some stage, with shortness of breath reported in half to three quarters of patients as they approach death. [1] Other frequently reported symptoms are restlessness and agitation, swallowing difficulties and aspiration, and pressure ulcers. [1] Under treatment of symptoms is common and some evidence suggests reluctance to prescribe morphine, which can be effective for both pain and dyspnoea, is a barrier to treatment. [1]

The ability to assess pain is affected by dementia, and there is also evidence that dementia is associated with persistent pain, which is likely to be under treated. [2] Limited research in this area has been done and focuses mainly on caregiver assessment of pain. Barriers to pain assessment include lack of recognition of pain, lack of staff training and non-use of assessment tools. [3] Many tools are available to assist with this, and structured protocols for symptom management may improve the outcomes for patients. However there is no gold standard, and validation of pain scales is challenging [2,4,5] with all available tools requiring further validation and improvement. [6,7] Ideally pain assessment should be by self-report, however behavioural or observational assessment tools should be used if the patient is unable to self-report. [4] Assessment of pain using such tools may also be done by non-medical staff and evidence supports their use by trained allied health staff such as social workers. [5] Familiarity to the patient and provision of person-centered care is an important element of pain assessment. [3]

Agitation and behavioural management are important problems in advanced dementia, both in community settings and in residential aged care. Non-pharmacological approaches are recommended as best practice and there are significant risks and burdens associated with psychotropic medications in this setting. [12] Within institutions, the use of restraints is associated with increased risk of falls-related injury and distress. Strategies for active identification and management of delirium may reduce the problem. Policies for restraint-free care are needed, and these require education and support for staff. [9,10]

Management of sleep disturbance in dementia is frequently problematic, and pharmacological management with sedatives is frequently ineffective and associated with potential adverse effects. A systematic review of melatonin suggests that this may perhaps be an effective treatment for the problem, with some evidence for reduction of problems related to sun-downing / agitation. [8]

Whilst evidence based guidance is available for safe nursing management of patients with swallowing difficulties, including those with dementia, [11] this guidance does not address the palliative or end-of-life context specifically. Goals of care in a palliative approach reflect a different balance of the priorities between a dominant focus on safety, versus the patient’s comfort and pleasure at the end-of-life.

Over treatment with burdensome treatments around the time of death has been widely reported – including antibiotics, tube-feeding and hospitalisation of dying nursing home patients. [1]

Some evidence suggests that patients with dementia benefit from the involvement of palliative care services at the end-of-life including improved outcomes for families, however it may be that the main benefit from the involvement relates to helping families understand the terminal nature of the the condition and to be prepared for the patient’s death. [1] 

Implications for practice

  • Recognition of the spirituality and personhood of the person with cognitive impairment and communication difficulty needs to be a fundamental aspect of aged care. 
  • Patients with severe dementia are at risk of under-treatment of distressing symptoms, which can greatly reduce their quality of life. These include pain, nausea, dyspnoea, delirium, depression, and skin and bowel problems.
  • Symptom management for patients with dementia requires an active approach to assessment, based on routine and ongoing use of assessment tools and protocols, as part of a treatment plan that is focused on the person’s needs and wishes.
  • Relevant considerations for a palliative approach to swallowing problems include:
    • assessing level of risk
    • understanding what foods the person enjoys
    • considering whether allowing foods to improve quality of life and accepting if aspiration risk is in keeping with values and wishes
      involving family in decisions, and
    • having a plan in place to manage aspiration pneumonia if this occurs – this may be symptomatic management rather than antibiotics.
  • Training of staff in Residential Aged Care Facilities about symptom management is crucial, and use of palliative care guidelines and involvement of palliative care services are important here. Australian guidelines for caring for patients with dementia or who are living in residential aged care facilities, are available, and address the major symptom concerns.
  • Dementia-specific pain assessment tools are available and improve the management of pain in patients with advanced dementia.
  • Barriers to treatment include reluctance to appropriately prescribe opioids, however there are guidelines to assist with the use of opioids and other analgesics in patients with dementia.
  1. van der Steen JT. Dying with dementia: what we know after more than a decade of research. J Alzheimers Dis. 2010;22(1):37-55.
  2. Goodman C, Evans C, Wilcock J, Froggatt K, Drennan V, Sampson E, et al. End of life care for community dwelling older people with dementia: an integrated review. Int J Geriatr Psychiatry. 2010 Apr;25(4):329-37.
  3. McAuliffe L, Nay R, O'Donnell M, Fetherstonhaugh D. Pain assessment in older people with dementia: literature review. J Adv Nurs. 2009 Jan;65(1):2-10.
  4. Ni Thuathail A, Welford C. Pain assessment tools for older people with cognitive impairment. Nurs Stand. 2011 Oct 12-18;26(6):39-46.
  5. Park J, Castellanos-Brown K, Belcher J. A review of observational pain scales in nonverbal elderly with cognitive impairments. Res Soc Work Prac. 2010;20(6):651-64.
  6. Zwakhalen SM, Hamers JP, Abu-Saad HH, Berger MP. Pain in elderly people with severe dementia: a systematic review of behavioural pain assessment tools. BMC Geriatr. 2006 Jan 27;6:3.
  7. Smith M. Pain assessment in nonverbal older adults with advanced dementia. Perspect Psychiatr Care. 2005 Jul-Sep;41(3):99-113.
  8. de Jonghe A, Korevaar JC, van Munster BC, de Rooij SE. Effectiveness of melatonin treatment on circadian rhythm disturbances in dementia. Are there implications for delirium? A systematic review. Int J Geriatr Psychiatry. 2010 Dec;25(12):1201-8.
  9. Edith Cowan University. Guidelines for a Palliative Approach in Residential Aged Care. Canberra; National Health & Medical Research Council & National Palliative Care Program:2006.
  10. Harding S. Delirium in Older People. Department of Health and Ageing, 2006.
  11. Ramritu P, Finlayson K, Mitchell A, Croft G. Identification and nursing management of dysphagia in individuals with neurological impairment. Joanna Briggs Institute for Evidence Based Nursing and Midwifery. 2000; Systematic Review No. 8.
  12. Medication management in residential aged care: Antipsychotic therapy for behavioural and psychological symptoms of dementia. NPS Medicinewise, 2011.

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Last updated 22 March 2019