Cognitive Issues

What we Know

The provision of palliative care in the context of older age needs to consider some specific issues including cognitive decline, confusion, dementia and/or communication difficulties. As the community ages, dementia is becoming increasingly common. Planning for future changes should be initiated before a person’s decision-making capacity becomes impaired or as soon as possible after a diagnosis of dementia. A palliative approach to care is appropriate for older adults with cognitive impairment, particularly when care is individualised. Palliative care is associated with reduced pain, restlessness and agitation and a higher likelihood of a person dying in their location of choice.

Go to Evidence Summary

What can I do?

Remember to look beyond dementia and understand that a person living with dementia is still an individual and so are their carers.

If a person cannot communicate, he or she may respond well to sound and touch.

Impaired cognition makes assessment and management of pain more complex. Tools such as the Abbey Pain Scale and reports from family and carers are useful - see Pain in Residential Aged Care Facilities: Management strategies (requires payment but Executive summary is free)

Check the RACGP Silver Book sections on Dementia and Behavioural and psychological symptoms of dementia for practical guidance on care issues.

Understand what your role can be in advance care planning. Check if there is an advance care plan or directive. Make sure that a substitute decision-maker is identified and clearly noted in care documentation. The substitute decision-maker may not necessarily be the next-of-kin.

End-of-life care in a residential aged care home setting may mean changing usual care practices eg. not showering or getting a person out of bed.

People with moderate to severe levels of cognitive impairment associated with dementia or other conditions, cared for at home, may be eligible for the dementia and cognition supplement.

Tell families they can find high-quality and trustworthy dementia resources and information at healthdirect or Dementia Australia.

Carers may need to know of options for respite care.

The Kimberley Indigenous Cognitive Assessment (KICA-Cog) or KICA-Screen tool is recommended for use with remote living Indigenous Australians as it is considered culturally appropriate.

The Rowland Universal Dementia Assessment Scale (RUDAS) should be considered for assessing cognition in CALD populations.

palliAGED Tip sheets

Tips for Careworkers:
Advanced Dementia

Tips for Nurses:
Advanced Dementia

What can I learn?

To understand dementia from the person’s perspective, listen to this podcast from Theresa Flavin for NPS MedicineWise about changed behaviours

For tips on medicines and other modalities to help improve the quality of life of residents living with dementia, listen to this podcast from Kara Joyce who delivers dementia education programs for NPS MedicineWise

Dementia Australia Help Sheets for advice, common sense approaches and practical strategies on the issues most commonly raised about dementia.

Read Palliative Care and Dementia (974kb pdf) report for Dementia Australia which provides guidance on palliative and end-of-life care for people with dementia and those who support them

Check out the dementia-specific training learning modules from Dementia Training Australia for aged care staff, health care professionals, undergraduate trainees, and a range of other professionals and community service providers.

Check out The National Institute of Ageing database of detection and management of cognitive impairment tools.

Complete one of the advance care planning modules provided by Advance Care Plannnig Australia

Watch one of these videos:

Read:

Lloyd-Williams M, Dening KH, Crowther J. Dying with dementia—how can we improve the care and support of patients and their families. Ann Palliat Med. 2017 Oct;6(4):306-309. doi: 10.21037/apm.2017.06.23.

What can my organisation do?

Ensure that you provide a dementia-friendly environment (186kb pdf) for people in your care.

Unnecessary hospitalisation may increase the likelihood of delirium developing. Before organising a hospital transfer, confirm the client’s or resident’s wish.

So that treatment is in line with wishes and preferences, ensure that there are clear processes

for people with capacity to document their preferences for care
for people who no longer have capacity, that substitute decision-makers are nominated
that care plans are regularly reviewed.

Page updated 03 November 2021