Research
Improving care in end-stage dementia with the End of Life Care Assessment Tool for Dementia This study is being undertaken by Carolyn Bourke (Moir) who is a PhD Carolyn candidate at the University Bourke of Notre Dame, Australia. PhD candidate Carolyn (Moir) Bourke (Moir) has worked in Residential Aged Care for over 20 years as a facility clinical manager and as a palliative consultant. She has observed first-hand the challenges surrounding end of life care for people with advanced dementia. The study is focused on developing an assessment tool called the End-of-Life Care Assessment Tool for Dementia (EoLCATD). The EoLC-ATD will be used by registered nurses to identify when a person living with dementia is in the advanced stage. The tool identifies discrete changes in the person’s bio-psychosocial health status and different areas of function in advanced dementia and, thus, provides relevant data to plan and deliver individualised end of life care. The tool will be of benefit to people with advanced dementia and reduce the variability in end-of-life care that currently occurs in Australian Residential Aged Care (RAC) services (Homes) and community services. The issue that staff face in planning end-of-life care with a person living with advanced dementia, is that very often the person is unable to express their needs, explain the
34 | Pallium
symptoms of late-stage disease and make decisions about care and treatment choices. Features of this irreversible incurable progressive neurodegenerative disease include an inability to recognise familiar objects, surroundings and people, increasing physical frailty with balance issues, difficulty with eating and incontinence. In the advanced stage the person may be aphasic, bed/chair fast, doubly incontinent, unable to attend to activities of living, swallow, and recognise and acknowledge close family. It is of significant concern that aged care staff may fail to recognise when a person with advanced dementia requires palliative care before this advanced-stage occurs. A review of the literature indicates that while instruments exist to screen, measure progression and stage dementia, these generally focus only on changes in physical and cognitive function. A few instruments focus on symptoms of ‘suffering’ in advanced and late-stage dementia. Currently, no single validated dementia assessment instrument identifies the
The tool will be of benefit to people with advanced dementia and reduce the variability in end-of-life care that currently occurs in Australian Residential Aged Care.
