Key Messages (this topic is currently under review)

  • Dementia is a terminal illness, and a palliative approach improves quality of life for patients with dementia. Understanding the terminal nature of the condition and its common patterns helps families and caregivers as they make care decisions.
  • Planning ahead for health care needs is essential because of the progressive cognitive impairments and eventual loss of decision-making capacity associated with dementia. Advance care planning is important and should be done early. Health care professionals should support and encourage this.
  • The main concerns for patients with advanced dementia as they approach the end of life are:
    • under-treatment of symptoms that may be distressing, and
    • over-treatment with burdensome interventions that do not produce benefit.
  • Routine screening and assessment for symptoms, and appropriate protocols to assist management can assist in better management of symptoms in dementia. Involvement of palliative care services in care planning and support can be beneficial.
  • Transfer to hospital from residential aged care facilities or treatment with feeding tubes, antibiotics or mechanical ventilation, provide no benefit and result in fragmentation of care arrangements that are familiar, safe and comforting for a dying person with advanced dementia.


As the community ages, dementia is becoming increasingly common. The estimated prevalence of dementia in Australia in 2011 was around 298,000 persons, and this is predicted to rise to 900,000 by 2050. [1] Dementia is an incurable, life limiting condition. [2] Advanced dementia is therefore a condition for which a palliative care approach is appropriate, [3,4] whilst the diagnosis of early dementia provides a potential opportunity for patients and their carers to undertake advance care planning. Cognitive impairment carries an increased risk of mortality; it is known that the increase in mortality increases with severity of dementia, even though the mechanism for this is not fully understood. [5]

The key challenges for patients, families and health care providers come from the impairment of decision-making capacity and / or loss of communication ability which occur as dementia progresses. These two issues affect the ability of health care providers to assess and treat the problems of a patient with advanced dementia.

For the person with dementia approaching the end of their life, the main health care concerns relate to the need to make some decisions in advance about their future treatment. Advance care planning can be used on the one hand to help guide treatment of symptoms that cause distress, leading to worse quality of life and affecting comfort, and on the other hand, to define limits for treatment more invasive interventions that may not improve quality of life and can contribute to symptom burden and distress. [6,7] This includes defining the clinical and individual circumstances that would determine when a particular intervention might or might not be pursued, and when these decisions should be reviewed. Wherever possible these considerations should occur in the context of prior discussion had with the person with dementia, had earlier in the illness trajectory when they had capacity to discuss their own values, wishes and beliefs.

Significant palliative care needs have been identified in the population with dementia, however access to palliative care services for patients with dementia continue to be limited. [4] The policy and resource implications are challenging, and different models for providing palliative care for those with advanced dementia are evolving.

Guidelines for the care of patients with dementia are evolving in many countries. These are mainly consensus-based, and focus on the need for and encouragement of advance care planning processes, continuity of care, and education for clinicians and caregivers about specific issues in relation to dementia. The need for evidence-based guidance and more research has been identified. [3]

Topics to be covered here summarise the current evidence about the palliative care of patients with dementia. They are:

Palliative Care Challenges
Caregivers and Care Settings
Prognosis and Advance Care Planning
Symptom Management

Active research areas / controversies

  • The literature related to palliative care needs in dementia is predominantly descriptive. Most research has been done in residential care settings rather than in the community. Studies that test interventions to improve care, that compare different settings of care, or that develop and validate assessment tools and outcome measures, are needed. [8]
  • Many patients and families do not perceive dementia as a terminal condition, and are unaware of the lack of benefit of many interventions such as cardiopulmonary resuscitation or invasive ventilation in advanced dementia. [9] Given this context, the use of advance directives and how they influence care, and the need for structured processes for timely decision-making by patients and caregivers, are critical issues for study.
  • The role of palliative care services in the care of patients with dementia is controversial, important, and needs further study. Specific topics that need to be addressed include programs, which focus on communication around end-of-life issues and symptoms, and improving continuity of care for people with dementia. [3,6]
  • Available tools for prognostic prediction in individuals with dementia have moderate predictive accuracy, and still present difficulty in identifying the onset of the terminal phase. [5,10] This makes clinical decision-making difficult. Better prognostic tools, for instance a well-validated risk score, are needed. [10]
  • Pain assessment in patients who are unable to communicate or have impaired cognition is a complex challenge. A number of assessment tools exist but all require additional validation. There are also no tools which specifically address pain assessment in the patient with dementia and superimposed delirium, where features of delirium and pain may overlap. There is a need for further research in this area. Structured pain management pathways have been proposed as a strategy to improve care. [11-14]
  • Ethnicity affects the expectations, experiences and needs of caregivers, and interventions need to be tailored to these. Evaluation of the outcomes of interventions should be sensitive to ethnicity, and data on ethnic background should be routinely collected in aged care research and as part of service-related data. [15]
  • Evidence about depression, grief and bereavement issues affecting caregivers is emerging, but more is needed to understand the risk factors and outcomes for this population. [16]
  1. Australian Institute for Health and Welfare (AIHW). Dementia in Australia. 2012; AIHW Cat. no. AGE 70.
  2. Mitchell SL, Teno JM, Kiely DK, Shaffer ML, Jones RN, Prigerson HG, et al. The clinical course of advanced dementia. N Engl J Med. 2009 Oct 15;361(16):1529-38.
  3. 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.
  4. Birch D, Draper J.  A critical literature review exploring the challenges of delivering effective palliative care to older people with dementia. J Clin Nurs. 2008 May;17(9):1144-63.
  5. Dewey ME, Saz P. Dementia, cognitive impairment and mortality in persons aged 65 and over living in the community: a systematic review of the literature. Int J Geriatr Psychiatry. 2001 Aug;16(8):751-61.
  6. Parsons C, Hughes CM, Passmore AP, Lapane KL. Withholding, discontinuing and withdrawing medications in dementia patients at the end of life: a neglected problem in the disadvantaged dying? Drugs Aging. 2010 Jun 1;27(6):435-49.
  7. Dening KH, Jones L, Sampson EL. Advance care planning for people with dementia: a review. Int Psychogeriatr. 2011 Dec;23(10):1535-51.
  8. 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.
  9. Westenhaver TF, Krassa TJ, Bonner GJ, Wilkie DJ. Advance care plans for CPR or mechanical ventilation in patients with dementia. Nurse Pract. 2010 Dec;35(12):38-42.
  10. Lee M, Chodosh J. Dementia and life expectancy: what do we know? J Am Med Dir Assoc. 2009 Sep;10(7):466-71.
  11. Ni Thuathail A, Welford C. Pain assessment tools for older people with cognitive impairment. Nurs Stand. 2011 Oct 12-18;26(6):39-46.
  12. 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.
  13. 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. 
  14. Smith M. Pain assessment in nonverbal older adults with advanced dementia. Perspect Psychiatr Care. 2005 Jul-Sep;41(3):99-113.
  15. Napoles AM, Chadiha L, Eversley R, Moreno-John G. Reviews: developing culturally sensitive dementia caregiver interventions: are we there yet? Am J Alzheimers Dis Other Demen. 2010 Aug;25(5):389-406.
  16. Chan D, Livingston G, Jones L, Sampson EL. Grief reactions in dementia carers: a systematic review. Int J Geriatr Psychiatry. 2013 Jan;28(1):1-17.
Last updated 27 September 2018