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.

• 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.

Management of Focused Symptoms