What is dementia?

Dementia is any one of a group of diseases that all cause neurological decline. All forms of dementia lead to memory loss and confusion, loss of independence, communication difficulties and behavioural changes.

The most common form of dementia is Alzheimer’s disease, but there are many others. Some forms of dementia are associated with particular conditions, for example Parkinson’s disease or Huntington’s disease. There may be special care considerations for people with other forms of dementia. Some dementias may affect people at a much younger age than is usual for Alzheimer’s disease.

Dementia is a progressive disease that follows a long, slow pattern of decline over many years. This slow dwindling away has been described as the long goodbye. It may affect:

  • The way families grieve, the kind of support they need
  • The way care givers perceive the needs of people with advanced dementia
  • Planning and implementing palliative care.

Researchers in many countries are looking at ways to improve the care of people with dementia. There is emerging evidence that the following may benefit people with dementia:

  • Early diagnosis, allowing better treatment, and informed choices for future care
  • Early referral to palliative care and implementation of advance directives
  • Involvement of family in care planning
  • The use of a person centred approach to care
  • Improving education for care providers in RAC in pain management and palliative approaches to care.

Dementia in Australia

As Australia’s population ages the number of people with dementia is growing. Providing care to the number of people living with dementia is challenging for the health care system and for RAC in particular:

  • There are more than 162,000 people living in RAC in Australia and 60% of them have a diagnosis of dementia [1-2]
  • Dementia and Alzheimer’s disease has become the third leading cause of death in Australia [3]. Overall dementia was either the leading cause of death or an associated cause of death in 20% of deaths in Australia in 2009.
  • People living with dementia may die from heart disease, strokes, hypertension, respiratory illness, cancer and kidney disease [3].

Palliative care and dementia

Palliative care services have traditionally been seen to improve the care of people dying of cancer. Now palliative care practices and approaches are being used in other diseases. Bringing palliative care knowledge to RAC can help people living with late stage dementia. [4]

There are challenges in providing end-of-life care to people with dementia. These include:

  • Difficulty in recognising the terminal phase of dementia
  • Difficulties with communication
  • Providing care that is culturally and socially appropriate to the person
  • Providing physical and supportive care to the very frail
  • Appropriateness of medical interventions
  • Awareness of palliative care options
  • Communication between involved services
  • The importance of communication with family and surrogate decision makers
  • Recognition and management of symptoms and distress
  • Going beyond task-focused care. [5]
  • Early use of advanced care planning. [6]


It can be very difficult to recognise when a person with late stage dementia is dying. Recognition of dying status is a necessary first step to implementing palliative care. Changes in alertness, care needs, behaviour, oral intake and perceived comfort may all be signs of approaching dying.  People in the late stages of dementia have very limited ability to communicate. They cannot describe their symptoms or indicate their wishes in regard to care.

There is concern that symptoms common to patients near death are under reported in people with late stage dementia and may not be recognised or treated appropriately. An observed change in behaviour may be the only evidence of a new symptom such as pain. It warrants further assessment.

Symptoms that people dying with dementia may experience include pain, shortness of breath, fatigue, restlessness and difficulty swallowing. Pneumonia is often present at the end of life and may be a cause of further distress.

People with dementia commonly experience difficulty eating and drinking. Caregivers and families may be concerned that the person with dementia may be receiving inadequate food and fluids.

  • Useful Tip

As the evidence indicates that artificial nutrition and hydration doesn't help people with late stage dementia, skilled hand feeding should be considered.


Related Evidence

RAC PubMed Dementia Search

  1. Australian Institute of Health and Welfare. Australia's health 2010 [Internet]. 2010 [cited 2012 Oct 10]; AIHW cat. no. AUS 122.
  2. Australian Institute of Health and Welfare. Residential aged care in Australia 2009-10: a statistical overview [Internet]. 2011 [cited 2012 Oct 10]; AIHW cat. no. AGE 66.
  3. Australian Bureau of Statistics. 3303.0 - Causes of Death, Australia, 2009 [Internet]. 2011 [cited 2012 Oct 10]; ABS cat. no. 3303.0.
  4. Hines S, McCrow J, Abbey J, Foottit, J, Wilson J, Franklin S et al. The effectiveness and appropriateness of a palliative approach to care for people with advanced dementia: a systematic review. JBI Library of Systematic Reviews. 2011;9(26):960-1131.
  5. Lawrence V, Samsi K, Murray J, Harari D, Banerjee S. Dying well with dementia: qualitative examination of end-of-life care.Br J Psychiatry. 2011 Nov;199(5):417-22. Epub 2011 Sep 22.
  6. Robinson L, Dickinson C, Rousseau N, Beyer F, Clark A, Hughes J, et al. A systematic review of the effectiveness of advance care planning interventions for people with cognitive impairment and dementia. Age Ageing. 2012 Mar;41(2):263-9. Epub 2011 Dec 8.

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Last updated 20 October 2017