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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 qualit…

A new interesting article has been published in Palliat Med. 2018 Nov 8:269216318809571. doi: 10.1177/0269216318809571. [Epub ahead of print] and titled:

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

Authors of this article are:

Sellars M, Chung O, Nolte L, Tong A, Pond D, Fetherstonhaugh D, McInerney F, Sinclair C, Detering KM.

A summary of the article is shown below:

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.

Check out the article’s website on Pubmed for more information:



This article is a good source of information and a good way to become familiar with topics such as:

Dementia;advance care planning;carers;end-of-life;qualitative research;systematic review

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