Palliative Care Challenges

Lack of understanding within the community of the terminal nature of dementia leads to inappropriate care at the end-of-life, and reduces the potential benefits that would come from using a palliative approach. [1,2] It has been suggested that the model of care should be framed in terms of comprehensive care for quality of life and comfort. [3]

There is currently little high level evidence on which to base a palliative care approach in caring for people with advanced dementia. Studies of palliative care provision in dementia have yielded some contradictory findings, but the evidence base is small. Such research faces many ethical and methodological difficulties, and appropriate outcome measures for people who cannot communicate are challenging to define. [2,4,5] Much of the evidence base at present is descriptive. [5]

Integration of a palliative approach across settings, and continuity of care, are important goals in order to improve outcomes for patients with dementia at the end-of-life. [6,7] Practical strategies to improve the integration of a palliative care approach for patients with dementia have been highlighted by several authors. [2,4] Case conferencing has been studied and shows promise as a strategy to integrate care. [8]

Identification of the onset of the terminal phase of the disease is particularly challenging in dementia [6] and this may be a barrier to making appropriate end-of-life decisions. Staff working with patients with advanced dementia frequently lack confidence in making this assessment. [5]

Implications for practice

  • People with advanced dementia have palliative care needs that are frequently under-acknowledged and under-treated.
  • Failure to understand the terminal nature of dementia and the evolution of the symptoms and problems that occur in dementia can lead to inappropriate treatment, with worsening - rather than improvement - in quality of life. Such treatment is increasingly burdensome and distressing for patients as their dementia becomes more severe.
  • People with advanced dementia need a palliative approach to their care, in which benefits and burdens of all treatment options are always carefully considered. In early stages of the illness life prolonging treatments may be worthwhile. However as the disease progresses, the balance between benefits and burdens of treatment shifts towards comfort and quality of life. 
  • The palliative approach needs to be consistent, and integrated across different care settings. There is a role for involvement by specialist palliative care, but also dementia care providers, however the exact model and triggers for such referrals continue to evolve and are limited by resource availability in some settings.
  • Training and education are needed for staff and caregivers about the trajectory and outcomes of dementia and about strategies to improve symptom assessment and decision-making.
  • There is a need for continued dialogue between specialist palliative care and specialist dementia care providers to develop guidelines for best evidence based practice.
  1. 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.
  2. 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.
  3. Hennings J, Froggatt K, Keady J. Approaching the end of life and dying with dementia in care homes: the accounts of families. Rev Clin Geront. 2010;20(2):114-27.
  4. Sampson EL, Ritchie CW, Lai R, Raven PW, Blanchard MR. A systematic review of the scientific evidence for the efficacy of a palliative care approach in advanced dementia. Int Psychogeriatr. 2005 Mar;17(1):31-40.
  5. 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.
  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. Lorenz K, Lynn J, Morton SC, Dy S, Mularski R, Shugarman L, et al. End-of-life care and outcomes. Evid Rep Technol Assess (Summ). 2004 Dec;(110):1-6.
  8. Phillips JL, West PA, Davidson PM, Agar M. Does case conferencing for people with advanced dementia living in nursing homes improve care outcomes: Evidence from an integrative review? Int J Nurs Stud. 2012 Nov 28. pii: S0020-7489(12)00366-5.

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Last updated 27 May 2019