Dialogue on Ideal End-of-Life Care for Those With Dementia

Stewart-Archer, Lois A.; Afghani, Afrooz; Toye, Christine; Gomez, Frank A.

doi:10.1177/1049909114532342

Cited by 11 publications

(12 citation statements)

References 37 publications

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“…Rejecting the burdens of futile treatment. Some carers who had participated in ACP perceived dementia as a terminal condition and focused on promoting a 'good death' 58 in line with the preferences of the person with dementia only. Other carers reflected on circumstances in which they believed aggressive treatment caused only prolonged suffering and, thus, were preferring 'to let nature take its course' 26 -to have a 'natural death without machines'.…”

Section: Avoiding Dehumanising Treatment and Carementioning

confidence: 99%

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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

et al. 2018

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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.

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Section: Avoiding Dehumanising Treatment and Carementioning

confidence: 99%

“…The only measure I've got is that she is calm, contented, [but] my view [is] that she is [not] My family knows what I told them I want … all they have to do is tell everyone else'. (Person with dementia)58 'It's good to have the plan, but I also think you need the backup of your family to see that the plan is implemented to its best outcome'.…”

mentioning

confidence: 99%

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

et al. 2018

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“…This might be because a good death in the context of dementia has mainly been discussed from the viewpoint of healthcare professionals or family members. Only one article drew on the views of patients (Stewart‐Archer et al, 2015). Erel, Marcus, and Dekeyser‐Ganz (2017), in a review article on the barriers to implementing palliative care in dementia, pointed out that the “voice of patients” was missing in this field (Erel et al, 2017).…”

Section: Discussionmentioning

confidence: 99%

“…None examined the views of patients (Jones et al, 2019). Of the 11 articles we reviewed, six articles explained a good death from the viewpoint of healthcare professionals or family members (Godwin & Waters, 2009; Lawrence et al, 2011; Lopez et al, 2013; McCarron et al, 2010; van der Steen et al, 2017; van Uden et al, 2013) and only one article explained patientsʼ views (Stewart‐Archer et al, 2015).…”

Section: Discussionmentioning

confidence: 99%

Defining a good death for people with dementia: A scoping review

Takahashi

Yamakawa

Nakanishi

et al. 2021

Japan Journal Nursing Sci

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Aim End‐of‐life care for people with dementia is becoming increasingly important as the global population ages. However, there is no agreed definition of a good death for people with dementia. The current review examined previous literature to establish the current state of knowledge on this issue. Methods We conducted a scoping review using a standard methodological framework. Relevant studies were identified from four databases. Studies were included if they were in English, discussed palliative or end‐of‐life care for dementia, and defined or explained a good death. The definitions or explanations of a good death were categorized into subthemes, and grouped into broader themes. Results We identified 11 articles discussing or explaining a good death in dementia, which were published between 2009 and 2017. Most of these studies drew on the views of healthcare professionals and/or family members of people with dementia, and only one considered the views of people with dementia themselves. Ten themes were identified, including pain‐free status, peaceful/comfort, dignity, family presence, surrounded by familiar things and people, person‐centered communication, spirituality, life completion, treatment preferences, and other. Conclusions The characteristics of a good death in dementia showed similarities with those identified more generally. However, there were some themes that were specific to end‐of‐life care in dementia, notably “surrounded by familiar things and people” and “person‐centered communication”. To obtain a fuller picture of the nature of a good death in dementia, researchers need to examine the views of people living with dementia.

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“…A common theme within the literature is that ACP should take place early in the disease trajectory whilst people with dementia have sufficient cognitive abilities to articulate goals and the desired direction of care in the advanced stage of the dementia illness, including end of life care preferences, in collaboration with family members/significant others and staff. In this way, the ACP process is seen as a valuable way of building trusting relationships between all three parties (Stewart-Archer et al, 2015;Stewart et al, 2011;Vandervoort et al, 2014). Indeed, education and support for families as well as training for staff around issues of end of life care decisions within advanced dementia is clearly reflected within the literature (Reinhardt et al, 2014;Stewart et al, 2011).…”

Section: Iii) Management In Relation To the Needs Of People With Demementioning

confidence: 99%

The extended palliative phase of dementia – An integrative literature review

et al. 2016

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This article presents an integrative literature review of the experience of dementia care associated with the extended palliative phase of dementia. The aim was to highlight how dementia is defined in the literature and describe what is known about the symptomatology and management of advanced dementia regarding the needs and preferences of the person with dementia and their family carer/s. There was no consistent definition of advanced dementia. The extended palliative phase was generally synonymous with end-of-life care. Advanced care planning is purported to enable professionals to work together with people with dementia and their families. A lack of understanding of palliative care among frontline practitioners was related to a dearth of educational opportunities in advanced dementia care. There are few robust concepts and theories that embrace living the best life possible during the later stages of dementia. These findings informed our subsequent work around the concept, 'Dementia Palliare'.

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Dialogue on Ideal End-of-Life Care for Those With Dementia

Abstract: Understanding EoL preferences of those with dementia is critical for advocacy and service delivery.

Cited by 11 publications

References 37 publications

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

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

Defining a good death for people with dementia: A scoping review

The extended palliative phase of dementia – An integrative literature review

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