Date of Award

2023

Degree Name

Doctor of Philosophy (School of Nursing and Midwifery)

Schools and Centres

Nursing and Midwifery

First Supervisor

Professor Lynn Chenoweth

Second Supervisor

Professor Anna Williams

Third Supervisor

Ekavi Georgousopoulou

Abstract

Introduction

Often people living with advanced dementia do not receive person-centred palliative care until they are terminal. Two common barriers preventing provision of person-centred palliative care is staff’s uncertainty of dementia severity/stage and insufficient staff training in dementia symptom assessment. Evidence suggests that residential aged care nurses would benefit from gaining access to a measure that can build essential knowledge and skills in identifying advanced dementia symptoms, to ensure that planned care and support is responsive to the needs of the individual. The aims of this project were to develop and validate an advanced dementia symptom measure for use in residential aged care by registered nurses, named the End-of-Life Care Assessment Tool for Dementia (EoLC-ATD).

Methods

The conceptual framework guiding the project was based on The Social Psychological Theory of Personhood in Dementia and the Palliative Approach. The project was undertaken as five sub-studies. Sub-study one consisted of a review of dementia stage and dementia severity measures and bio-psychosocial symptom measures suitable for use in dementia care, resulting in a bank of advanced dementia symptoms that were potentially suitable for inclusion in an end of life assessment tool. Sub-study two undertook focus groups with registered nurses who worked in dementia specific units in the residential aged care setting to explore the nurses’ perceptions on the symptomology occurring in advanced dementia and their advice on the measures and procedures they used to assess when the person was in the advanced stage of dementia. Findings from the focus groups further informed the suitability of items for inclusion in in an end of life assessment tool. The findings of Sub studies one and two supported the development of draft constructs, items and scoring of an End of Life Care Assessment Tool (EoLC-ATD). Sub-study three was comprised of three Delphi survey rounds with Australian and international clinicians, consumers and advocates of aged, dementia and/or palliative care, to obtain consensus on the constructs, items and scoring of the EoLC-ATD. Sub-study four, piloted the EoLC-ATD to test construct validity and reliability. Sub-study five tested the validity of the EoLC-ATD.

Findings

The results of testing indicated that the EoLC-ATD was valid and reliable in assessing the residents advanced dementia symptomatology in this setting.

Conclusion

Assessment with the EoLC-ATD at set intervals can provide measurement of dementia symptom progression and support improved clinical outcomes for people with advanced dementia.

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