Provide Palliative Care - Dementia

Provide Palliative Care

Person-Centred Care

Person-centred dementia care reflects the importance of valuing the person with dementia. The acronym VIPS (as in ‘very important persons’) is an easy way to identify the key person-centred care principles. 11

  • V: Value people with dementia and those who care for them, promoting their citizenship rights, and entitlements regardless of age or cognitive ability.
  • I: Treat people as Individuals, appreciating that all people with dementia have a unique history and personality, physical and mental health, and social and economic resources, and these will affect their response to neurological impairment.
Provide Palliative Care - ELDAC Care Model
  • P: Look at the world from the Perspective of the person with dementia, recognising that each person’s experience has its own psychological validity, that people with dementia act from this perspective, and that empathy with this perspective has its own therapeutic potential.
  • S: Recognise that all human life, including that of people with dementia, is grounded in relationships and that people with dementia require an enriched Social environment, which both compensates for their impairment and fosters opportunities for personal growth. 11

Person-Centred Palliative Care

The VIPS model of person-centred care is consistent with the principles of palliative care, which are the following:

  1. Consumers physical and mental needs at the end of life are assessed and recognised.
  2. Consumers, families and carers are involved in end of life planning and decision making.
  3. Consumers receive equitable and timely access to appropriate end of life care within aged care facilities.
  4. End of life care is holistic, integrated and delivered by appropriately trained and skilled staff.
  5. The end of life care needs of consumers with dementia or cognitive impairment are understood and met within residential aged care.
  6. Consumers, families and carers are treated with dignity and respect.
  7. Consumers have their spiritual, cultural and psychosocial needs respected and fulfilled.
  8. Families, carers, staff and residents are supported in bereavement. 12

As indicated at the beginning of the ELDAC Dementia Toolkit, people living with dementia may die of dementia or from another condition while also having dementia. Individuals with early or moderate dementia may require end of life care if other conditions indicate. End of life care is appropriate for people with advanced dementia. 7

palliAGED has Practice Tips on Person-Centred Care for Nurses and Careworkers.

Advanced Dementia

Indicators that the person may have advanced dementia are:

  • Be unable to remember occurrences for even a few minutes, for instance forgetting that they have just had a meal.
  • Lose their ability to understand or use speech.
  • Be incontinent.
  • Show no recognition of friends and family.
  • Need help with eating, washing, bathing, toileting and dressing.
  • Fail to recognise everyday objects.
  • Be disturbed at night.
  • Be restless, perhaps looking for a long-dead relative.
  • Be aggressive, especially when feeling threatened or closed in.
  • Have difficulty walking, eventually perhaps becoming confined to a wheelchair.
  • Have uncontrolled movements.
  • Have permanent immobility, and in the final weeks or months the person will be bedridden. 13

The Advance Project® has education modules for symptom management for people with dementia. You need to register, but these modules are free.

The Agency for Clinical Innovation video called Clinical Issues in End of Life Dementia Care provides an overview of management of common symptoms at the end of life for people with dementia.

palliAGED has Practice Tips for Nurses on Advanced Dementia, as well as for Careworkers.

The Cognitive Decline and Partnership Centre has produced Clinical Practice Guidelines for People with Dementia (1MB pdf). While not specific to end of life care, there are good practice points.

Other ELDAC Resources

The ELDAC Residential Aged Care, Home Care, and Primary Care Toolkits have a framework for providing palliative care. Depending on where the person with dementia is being cared for it is recommended to reference to these resources to complement the dementia specific assessments provided below.

ELDAC Toolkit Educational Videos

Watch the ELDAC Toolkit Educational Videos on Assess Palliative Care Needs for Residential Aged Care and Home Care that will help you to describe the importance of person-centred and holistic assessment; identify the four domains of wellbeing used in palliative care assessment; and recognise the importance of care planning to support end of life care.

Management of Focused Symptoms

Treatment of pain for people with dementia requires consideration of reversible causes and often a combination of non-pharmacological and pharmacological approaches. Reversible causes could include constipation, ill-fitting aids or supports, immobility, metabolic abnormalities and infection. Use of appropriate prescribing for an older cognitively impaired population must be considered if pharmacological treatment is warranted. 7

The Royal Australian College of General Practitioners (RACGP) Silver Book has a section on pain including pharmacological management.

palliAGED has information on pain management.

The Eating and Drinking with Acknowledged Risk (EDAR) framework described in the Dementia Toolkit Assess Palliative Care Needs section can assist in maintaining nutrition and hydration as a person’s dementia progresses. ESPEN Guidelines on nutrition in dementia are available from the European Society for Clinical Nutrition and Metabolism (ESPEN).

There is no conclusive evidence to support artificial feeding (via a tube) in terms of prolonging life for a person with dementia and it may cause harm. Artificial hydration may be appropriate for dry mouth and should be considered on a case by case basis. 7

palliAGED has information on:

The Dementia Collaborative Research Centre – Assessment and Better Care (DCRC-ABC) has created a Clinician’s Field Guide to Good Practice for Managing Behavioural and Psychological Symptoms of Dementia (BPSD). This guide outlines a behaviour management process and how to assess and manage common BPSD symptoms.

palliAGED has Practice Tips for Nurses on advanced dementia and behavioural changes, as well as for Careworkers.

Dementia Support Australia has developed the LGBTI and Dementia – Understanding Changes in Behaviour booklet (5MB pdf) for aged care staff who are caring for lesbian, gay, bisexual, transgender and intersect (LGBTI) people. While not specific to palliative care the booklet provides an overview of some of the issues LGBTI people may have faced, which may impact on changes in behaviour if the person has dementia.

  • Family Resources
Carer Gateway
The Carer Gateway provides emotional, practical and financial support for carers. Services include: coaching, counselling, respite care, connecting with other carers, online skills courses, and financial support. This fact sheet (1.3MB pdf) explains the services that are available and is useful to provide to families.

CarerHelp is a website to refer families with information for carers of people who are at the end of their life. There are five pathways with information provided across the caring journey. Carer Check is an interactive tool that ask questions on how a carer is feeling and then suggests resources based on their answers.

Palliative Care Australia

Palliative Care Australia (PCA) has a comprehensive website devoted to palliative care resources. Some of these include:


CareSearch has a webpage about clients or residents wanting to talk with someone – in terms of finding the right person, professional help or support group. There is also a webpage on communication at the end of life that has resources to assist in communicating with families, especially at such as emotional time.

Dementia Centre for Research Collaboration (DCRC)

The DCRC has developed a guide for family carers called Dealing with Behaviours in People with Dementia.

Dementia Australia

Dementia Australia has produced the Dementia Guide for people with dementia, including a section on understanding the later stages of dementia and palliative care. They also have a National Dementia Helpline.

Page last updated 10 October 2023