Advance Care Planning Needs to be Different for People with Dementia
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Dementia poses unique challenges for advance care planning (ACP) because incapacity to make decisions is more certain than in other diseases and is progressive over a long period. Many people living with dementia will live for an extended time when they are unable to make or express their own choices about matters that are important to them over a wide range of issues.
This project, under the Australian Cognitive Decline Partnership Centre, looked at how ACP can be improved to better meet the needs of people with dementia. The study design used a qualitative approach, using semi-structured interviews to gather the perspectives of over 80 individuals including consumers, carers, community, health and aged care providers, academics and government officials involved with ACP.
Seven key features emerged as important to enable ACP systems to be improved to meet the needs of people with dementia. The findings are now being incorporated into new approaches to increase advance care planning and being trialled in different settings. The forum presentation will outline the findings and provide an overview of the resources developed to support an increased up take of advance care planning for those with dementia.
Professor Meera Agar
Professor Meera Agar is the Professor of Palliative Medicine, Centre for Cardiovascular and Chronic Care, Faculty of Health, University of Technology Sydney. She is a palliative care clinician in South West Sydney Local Health District, and the Clinical Trial Director for the Ingham Institute of Applied Medical Research. Prior to her academic appointment in 2015 she was the service director for a large tertiary palliative care service in South West Sydney, which provided inpatient, ambulatory and community palliative care. Her research interests include clinical trials and health service evaluation in palliative care, and she has a particular interest in improving supportive care for people with impacts of advanced illness on the brain (dementia, delirium, brain tumours).
Professor Agar is the Project Lead for a research project examining how best to improve advance care planning for those with dementia and other forms of cognitive decline. This has been funded by the National Health and Medical Research Council’s Cognitive Decline Partnership Centre.
Presented by The Bob Hawke Prime Ministerial Centre and Palliative Care SA
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