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Perspectives of people with dementia and carers on advance care planning and end-of-life care: A systematic review and thematic synthesis of qualitative studies.


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.

SUBMITTER: Sellars M 

PROVIDER: S-EPMC6376607 | biostudies-other | 2019 Mar

REPOSITORIES: biostudies-other

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Perspectives of people with dementia and carers on advance care planning and end-of-life care: A systematic review and thematic synthesis of qualitative studies.

Sellars Marcus M   Chung Olivia O   Nolte Linda L   Tong Allison A   Pond Dimity D   Fetherstonhaugh Deirdre D   McInerney Fran F   Sinclair Craig C   Detering Karen M KM  

Palliative medicine 20181108 3


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