Dr Carolyn Bourke1
1UTS, Sydney, Australia
Biography:
Dr Carolyn Bourke is currently working as practice development research fellow; she has over 25 years’ experience in nursing and aged care specialising in end-of-life care for advanced dementia. Her PhD completed in 2024 focused on Improving care in end-stage dementia with the development of an End-of-Life Care Assessment Tool for Advanced Dementia. Carolyn is a registered nurse and has post graduate qualifications in management, adult education and palliative care.
Abstract:
Background:
Dementia, a non-curable progressive neurocognitive disease and leading cause of death in Australia, especially among those aged 85–94. Severity ranges from mild to severe, impacting individuals differently. In aged care, 'end-of-life care' typically refers to the last 12 months of life.
Aim:
This project aimed to address the lack of an advanced dementia symptom measure suitable for use by registered nurses (RNs) by developing and validating the End-of-Life Care Assessment Tool for Dementia (EoLC-ATD).
Method:
Tool development and validation involved five sub-studies. Sub-studies, (1) reviewed dementia measures, creating a symptom bank; (2) focus groups with registered nurses explored symptom identification; (3) Delphi survey achieved consensus on core constructs for late-stage dementia; (4) piloted for validity and reliability; (5) further validated with 113 people with dementia.
Outcomes:
The study identified validated dementia measures to develop an item-bank which included 180 symptoms identified as occurring in advanced dementia, including those identified by the RN focus group (n = 17). Delphi surveys with dementia experts (n = 31) achieved 70% consensus for 25 of 26 EoLC-ATD items. Pilot testing of the EoLC-ATD by two nurses in eight persons with dementia showed good agreement for six constructs (Cohen's Kappa 0.856–0.927) and 26 items (Cronbach's alpha 77.0). An ‘other symptom’ item was included by recommendation. The 27-item EoLC-ATD field tested by 17 nurses in persons with dementia (n = 113) accurately identified advanced dementia symptoms (Cronbach's alpha 77.0, p < 0.001). Mortality at 180 days after baseline EoLC-ATD was significant (p < 0.001, area under the ROC curve p = 0.769). Piloting and testing indicated that the EoLC-ATD was valid and reliable.
Conclusion:
The EoLC-ATD is reliable and valid, supports informed decision-making, identification of symptoms of advanced dementia, enabling timely response, planning, and promoting a person-centred palliative approach for individuals living with advanced dementia.
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