Models of care for people with dementia approaching end of life: A rapid review

Lewis, Suzan; Triandafilidis, Zoi; Curryer, Cassie; Jeong, Sarah Yeun‐Sim; Goodwin, Nicholas; Carr, Sally; Davis, Daneill

doi:10.1177/02692163231171181

Cited by 6 publications

(1 citation statement)

References 51 publications

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“…Importantly, the study provides insight into how identification of functional decline may help clinicians identify when the last weeks of life are approaching. To improve end of life for people with dementia, future studies should develop and test dementia-specific models of care for end of life [ 38 ], which are underpinned by in-depth understanding of clinical, functional, and social changes occurring during the last weeks and months of life.…”

Section: Discussionmentioning

confidence: 99%

What care do people with dementia receive at the end of life? Lessons from a retrospective clinical audit of deaths in hospital and other settings

Triandafilidis,

Carr,

Davis

et al. 2024

BMC Geriatr

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Background The need for better end-of-life care for people with dementia has been acknowledged. Existing literature suggests that people dying with dementia have less access to palliative care, yet little is known about the care provided to people with dementia at the end of life. This study aimed to establish evidence related to end-of-life care for people dying with dementia in hospital compared to other settings. Methods A retrospective clinical audit of people who had a diagnosis of dementia and had accessed services within a local health district, who died between 2015 and 2019, was conducted. A total of 705 people were identified, and a subset of 299 people randomly selected for manual audit. Chi-square p-values were used to compare the place of death, and a t-test or non-parametric test was used to assess the significance of the difference, as appropriate. Measures of functional decline within one month of death were assessed using mixed effects logistic regression models. Results The characteristics of people differed by place of death, with people who died in hospital more likely to be living at home and to not have a spouse. Less than 1 in 5 people had advance care directives or plans. Many were still being actively treated at the time of death: almost half of people who died in hospital had an investigation in their final 72 hours, less than half of people were coded as receiving palliative care at death, and more than 2 in 3 people did not get access to specialist palliative care. Declining function was associated with the terminal phase. Conclusion This study provides novel insights for those providing end-of-life care for people with dementia. Healthcare professionals and policy makers should consider how demographic characteristics relate to the places people with dementia receive end-of-life care. The care provided to people with dementia in the last year of their life highlights the need for more support to prepare advance care documentation and timely consideration for palliative care. Changes in markers of nutritional status and function in people with advanced dementia may help with identification of terminal phases.

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Section: Discussionmentioning

confidence: 99%

What care do people with dementia receive at the end of life? Lessons from a retrospective clinical audit of deaths in hospital and other settings

Triandafilidis,

Carr,

Davis

et al. 2024

BMC Geriatr

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Symptom management for people with advanced dementia who are receiving end of life care

Drummond,

Johnston

2024

Current Opinion in Supportive &Amp; Palliative Care

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Purpose of review This review aims to synthesise contemporary research on symptom management for people with advanced dementia who are thought to be in the final year of life. It highlights the unique challenges faced by palliative care and dementia care specialists, offering insights into the clinical decision-making required to support those with advanced dementia in various care settings. Recent findings Recent studies indicate that people with advanced dementia often experience significant unmet palliative care needs, particularly regarding symptom management. Pain, breathlessness, and psychological distress are frequently mismanaged, which contributes to suboptimal care. Moreover, the unpredictable trajectory of dementia complicates the identification of end-of-life needs, which can result in fragmented care. Caregivers, both professional and family, struggle with managing complex symptoms, while family caregivers in home settings face added burdens in providing care without sufficient support. Summary Palliative care for people with advanced dementia is currently inadequate due to a lack of tailored interventions, poor symptom management, and disjointed care systems. Enhancing training for caregivers, fostering interdisciplinary collaboration, and focusing on integrated care approaches across home and institutional settings are crucial to improving quality of life and symptom control for people with advanced dementia.

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Mapping the evidence on dementia care pathways – A scoping review

Saragosa,

MacEachern,

Chiu

et al. 2024

BMC Geriatr

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Background One way of standardizing practice and improving patient safety is by introducing clinical care pathways; however, such pathways are typically geared towards assisting clinicians and healthcare organizations with evidence-based practice. Many dementia care pathways exist with no agreed-upon version of a care pathway and with little data on experiences about their use or outcomes. The objectives of the review were: (1) to identify the dementia care pathway’s purpose, methods used to deploy the pathway, and expected user types; (2) to identify the care pathway’s core components, expected outcomes, and implications for persons with dementia and their care partners; and (3) determine the extent of involvement by persons with dementia and/or their care partners in developing, implementing, and evaluating the care pathways. Methods We systematically searched six literature databases for published literature in the English language in September 2023 utilizing Arskey and O’Malley’s scoping review framework. Results The findings from the dementia care pathways (n = 13) demonstrated assistance in dementia diagnostic and management practices for clinicians and offered structured care processes in clinical settings. For this reason, these pathways emphasized assessment and interventional post-diagnostic support, with less emphasis on community-based integrated dementia care. Conclusion Future dementia care pathway development can seek the involvement of persons with dementia and care partners in designing, implementing and evaluating such pathways, ensuring that outcome measures properly reflect the impact on persons with lived dementia experience and their care partners.

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Models of care for people with dementia approaching end of life: A rapid review

Cited by 6 publications

References 51 publications

What care do people with dementia receive at the end of life? Lessons from a retrospective clinical audit of deaths in hospital and other settings

What care do people with dementia receive at the end of life? Lessons from a retrospective clinical audit of deaths in hospital and other settings

Symptom management for people with advanced dementia who are receiving end of life care

Mapping the evidence on dementia care pathways – A scoping review

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