Abstract
BackgroundEnd of life care for residents with advanced dementia in the aged care setting is complex. There is prolonged and progressive cognitive decline, uncertain disease trajectory, significant symptom burden and infrequent access to specialist palliative care. Residential aged care managers offer a unique perspective in understanding the experience of providing end of life care for residents with advanced dementia. They bring insight from the coalface to the broader policy context. The aim of this study was to describe the experience and perspectives of residential aged care managers on providing end of life care for residents living with dementia.MethodsFocus groups and semi-structured interviews were conducted with residential or care managers from various care homes from one dementia specific aged care organisation in Australia. A comprehensive sampling strategy was used in participating care homes. Transcripts were analysed using thematic analysis.Results20 residential or care managers from 11 aged care homes in two states of Australia participated in two focus groups (total 16 participants) or individual interviews (4 participants). Six themes were identified: laying the ground work to establish what families understand about dementia, playing the peacemaker in the face of unrealistic family demands and expectations, chipping away at denial and cultivating a path towards acceptance of death, recruiting general practitioners as allies, supporting and strengthening the front line, and dedication to optimal care is relentless but rewarding.ConclusionAged care manager participants described provision of end of life dementia care as a rewarding but sometimes fraught experience requiring persistent personalisation of care and communication to enable family acceptance of the resident’s terminal condition. The findings suggest that continuous front line aged care staff skill development, iterative family discussions, and partnership building between aged care staff and general practitioners, are all required to promote optimal end of life dementia care in residential aged care settings.
Highlights
End of life care for residents with advanced dementia in the aged care setting is complex
Professionals in the aged care setting, including some managers, have identified a general lack of knowledge and skill relating to the palliation of people with advanced dementia [13,14,15]
This study aims to describe the experiences and challenges faced by managers when delivering end of life care to residents with advanced dementia
Summary
End of life care for residents with advanced dementia in the aged care setting is complex. Residential aged care managers offer a unique perspective in understanding the experience of providing end of life care for residents with advanced dementia. They bring insight from the coalface to the broader policy context. The aim of this study was to describe the experience and perspectives of residential aged care managers on providing end of life care for residents living with dementia. There is a great need for generalist palliative care for people living with advanced dementia, in residential aged care [7, 8]. Professionals in the aged care setting, including some managers, have identified a general lack of knowledge and skill relating to the palliation of people with advanced dementia [13,14,15]
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