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Abstract

Background: Advance care planning aims to ensure that care received during serious and chronic illness is consistent with the person’s values, preferences and goals. However, less than 40% of people with dementia undertake advance care planning internationally.Aim: This study aims to describe the perspectives of people with dementia and their carers on advance care planning and end-of-life care.Design: Systematic review and thematic synthesis of qualitative studies.Data sources: Electronic databases were searched from inception to July 2018.Results: From 84 studies involving 389 people with dementia and 1864 carers, five themes were identified: avoiding dehumanising treatment and care (remaining connected, delaying institutionalisation, rejecting the burdens of futile treatment); confronting emotionally difficult conversations (signifying death, unpreparedness to face impending cognitive decline, locked into a pathway); navigating existential tensions (accepting inevitable incapacity and death, fear of being responsible for cause of death, alleviating decisional responsibility); defining personal autonomy (struggling with unknown preferences, depending on carer advocacy, justifying treatments for health deteriorations); and lacking confidence in healthcare settings (distrusting clinicians’ mastery and knowledge, making uninformed choices, deprived of hospice access and support at end of life).Conclusion: People with dementia and their carers felt uncertain in making treatment decisions in the context of advance care planning and end-of-life care. Advance care planning strategies that attend to people’s uncertainty in decision-making may help to empower people with dementia and carers and strengthen person-centred care in this context.

Item Type:	Article
Authors/Creators:	Sellars, M and Chung, O and Nolte, L and Tong, A and Pond, D and Fetherstonhaugh, D and McInerney, F and Sinclair, C and Detering, KM
Keywords:	dementia, advance care planning, carers, qualitative research, end-of-life, systematic review
Journal or Publication Title:	Palliative Medicine
Publisher:	Arnold
ISSN:	0269-2163
DOI / ID Number:	10.1177/0269216318809571
Copyright Information:	Copyright 2018 The AuthorsLicensed under Creative Commons Attribution 4.0 International (CC BY 4.0)https://creativecommons.org/licenses/by/4.0/
Related URLs:	UTAS Profile: McInerney, F
Item Statistics:	View statistics for this item

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