End of Life Care: A Scoping Review of Experiences of Advance Care Planning for People with Dementia.
Despite increasing attention given to dementia by international governments and policy makers, the focus of end of life care has been on the dying trajectory of malignant disease. People with severe dementia have complex physical and psychological needs, yet the disease is not always recognised as terminal. Advance Care Planning involving people with dementia and their families can provide opportunities to discuss and later, initiate timely palliative care. We conducted a scoping review of studies exploring decisions associated with the EoLC of people with dementia. Eligible studies had to report on decision making at the end of life and by whom (the dying person, clinician/health professional or relative/family member). Twenty-five eligible studies reported on Advance Care Planning and end of life care decisions for individuals with dementia. The papers highlight several challenges that need to be addressed in order to provide adequate and effective care for people with dementia as they near the end of their life.
Department of Health and Social Care, The Open University, UK.
Kerry
K
Jones
Centre for Ethics in Medicine, School of Community Medicine, University of Bristol, UK.
Giles
G
Birchley
Centre for Ethics in Medicine, School of Community Medicine, University of Bristol, UK.
Richard
R
Huxtable
The Centre for Research in Ageing and Cognitive Health, School of Psychology, College of Life and Environmental Sciences & PenCLAHRC, Institute of Health Research, University of Exeter Medical School, University of Exeter, UK.
Linda
L
Clare
Centre for Death and Society, Department of Social and Policy Sciences, University of Bath, UK.
Tony
T
Walter
Centre for Death and Society, Department of Social and Policy Sciences, University of Bath, UK.
Jeremy
J
Dixon
D032722:Advance Care Planning; D003657:Decision Making; D003704:Dementia / Q000451:nursing* / Q000523:psychology; D005190:Family / Q000523:psychology; D006282:Health Personnel; D006801:Humans; D010166:Palliative Care; D013727:Terminal Care
Advance Care Planning; death; decision-making; dementia; dying; end-of-life care