- 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.  Dementia is an incurable, life limiting condition.  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. 
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.  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. 
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
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. 
- 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.  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. 
- 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. 
- 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. 
Page created 01 May 2013
- Australian Institute for Health and Welfare (AIHW). Dementia in Australia. 2012; AIHW Cat. no. AGE 70.
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