Putting palliative care first: A nurse-led tool for advanced dementia assessment

An article written by Dr Carolyn Bourke, Professor Lynn Chenoweth, Dr Ekavi Georgousopoulou and Professor Anna Williams

Dementia is incurable and is the second leading cause of death of all Australians. [1] Dementia is made up of a collection of symptoms caused by a range of disorders affecting the brain. [2] The impact on the life of the person and their family is profound. In the later stages of dementia, the level of care needed is very high and usually beyond the family’s capacity to provide. In 2021–22, of over 242,000 people living in residential aged care, 54% (about 131,000) had dementia.  [3]

The Royal Commission into Aged Care Quality and the Clinical Practice Guidelines and Principles of Care for People with Dementia emphasise the importance of well-coordinated care during care transitions for people living with dementia and highlight the gaps in dementia care education of health and aged care staff.  [4, 5] Measurable outcomes set by the Commonwealth’s Strengthened Aged Care Quality Standards require aged care providers to recognise and address the needs, goals and preferences of people with dementia, including actively managing pain and other distressing symptoms, and providing access to specialist palliative and end-of-life care when required. [6]

For people living with dementia, holistic, person-centred palliative care is preferable as it provides early advance care planning, timely identification and management of advanced dementia symptoms. This is essential, as in the advanced stage of dementia the trajectory towards death is uncertain, even though there is progressive cognitive decline. Although there will be increased symptom burden, symptoms different to those occurring in other terminal illnesses will occur, which are frequently not easily detected by untrained staff. As well, limited access to specialist palliative care for the person with advanced dementia leads to poorer prognoses and greater suffering. [7, 8] Distressing symptoms frequently include eating and swallowing problems, infections such as pneumonia, febrile episodes, breathlessness, pain and contractures, compounded by communication impairment. Person-centred palliative and end-of-life care requires specialised knowledge and skills to monitor and support the many different symptoms occurring in advanced dementia. [9, 10]

To support the unique needs of people with advanced dementia, the End of Life Care Assessment Tool for Dementia (EoLC-ATD) was developed and validated for use by registered nurses in aged care settings. Grounded in palliative and person-centred care principles, the tool emphasises personhood as central to care. [11, 12] Development occurred in five stages, beginning with a review of validated dementia symptom and staging measures, resulting in an item-bank of 108 symptoms across seven constructs. Focus groups with 14 nurses refined the item-bank, followed by three Delphi survey rounds with 31 dementia and palliative care experts to reach consensus.

Face and content validity were established for six constructs:

• Global cognition,
• Personhood (autonomy/self-determination),
• Behaviour,
• Function or activities of daily living,
• Physiological function, and
• Psychological state. 

Twenty-six items were piloted with eight individuals with advanced dementia and achieved excellent reliability and repeatability. Nurse raters found it relevant, comprehensive, and acceptable. An additional item was added to capture other symptoms, and the tool was field tested with 113 individuals in 11 dementia care units. Results confirmed its validity and reliability across all constructs.

The higher the EoLC-ATD score, the more severe the dementia symptoms and the higher likelihood of death within 6 months. As a screening tool, the 27-item EoLC-ATD improves identification, monitoring and planning support for advanced dementia symptoms by registered nurses. [13] The EoLC-ATD is free, requires little training and takes 10-15 minutes to administer. The EoLC-ATD administration and scoring guidelines will be available on the ELDAC website. By administering the EoLC-ATD, registered nurses can better assess symptoms occurring in moderate to advanced dementia that are unique to the person, for the purpose of planning palliative and/or end-of-life care which supports the person’s unique symptoms.

Useful links

• palliAGED Practice Tip Sheets for Nurses
• ELDAC Dementia Toolkit
• ELDAC Education Podcast: Recognising the last days and last year of life. Professor Meera Agar
• Later stages and end of life (Dementia Australia)

References

1. Australian Institute of Health and Welfare (AIHW). Prevalence of dementia. 2023. In: Dementia in Australia [Internet]. Canberra: AIHW, [cited 2025 Aug 25].
2. World Health Organization (WHO). Dementia. Geneva: WHO; 2025 [cited 2025 Aug 28].
3. Australian Institute of Health and Welfare (AIHW). Dementia in Australia [Internet]. Canberra: AIHW; 2024 [cited 2025 Aug 18].
4. Royal Commission into Aged Care Quality and Safety. A summary of the final report. 2021. In: Final report: Care, dignity and respect [Internet]. Canberra: Commonwealth of Australia, [cited 2025 Sep 16].
5. Guideline Adaptation Committee. Clinical practice guidelines and principles of care for people with dementia. Sydney: Guideline Adaptation Committee; 2016 [cited 2025 Sep 16].
6. Department of Health Disability and Ageing. Strengthened aged care quality standards – August 2025. Canberra: Australian Government; 2025 [cited 2025 Sep 16].
7. Borbasi JAL, Tong A, Ritchie A, Poulos CJ, Clayton JM. "A good death but there was all this tension around"- Perspectives of residential managers on the experience of delivering end of life care for people living with dementia. BMC Geriatr. 2021;21(1):306.
8. Puente-Fernandez D, Mota-Romero E, Fernández-Alcántara M, Garcia-Caro MP, Roldán C, Montoya-Juarez R. Quality of dying among institutionalised nursing home residents from the caregivers' perspective: A mixed-methods study. J Adv Nurs. 2025.
9. Pennbrant S, Hjorton C, Nilsson C, Karlsson M. "The challenge of joining all the pieces together" - Nurses' experience of palliative care for older people with advanced dementia living in residential aged care units. J Clin Nurs. 2020;29(19-20):3835-3846.
10. Mitchell SL, Teno JM, Kiely DK, Shaffer ML, Jones RN, Prigerson HG, et al. The clinical course of advanced dementia. N Engl J Med. 2009;361(16):1529-1538.
11. Kitwood T, Bredin K. Towards a theory of dementia care: Personhood and well-being. Ageing Soc. 1992;12:269-287.
12. Sawatzky R, Porterfield P, Lee J, Dixon D, Lounsbury K, Pesut B, et al. Conceptual foundations of a palliative approach: A knowledge synthesis. BMC Palliat Care. 2016;15:5.
13. Bourke C, Chenoweth L, Georgousopoulou E, Williams A. Development and validation of the end-of-life assessment tool for advanced dementia: A multi method study. J Adv Nurs. 2025.

Authors

Dr Carolyn Bourke RN

Research Fellow

University of Technology Sydney

Professor Lynn Chenoweth

Honorary Professor of Nursing, Centre for Healthy Brain Ageing

University of New South Wales

Dr Ekavi Georgousopoulou

Senior Lecturer Biostatistics

University of Notre Dame Australia

Professor Anna Williams

Deputy Head of School (Research), School of Nursing and Midwifery

University of Technology Sydney