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Models of End of Life Care to Support People with Dementia: Results of an Evidence Review

Authors:

Nicholas Goodwin ,

Central Coast Research Institute For Integrated Care, NSW, Australia, AU
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Suzanne Lewis,

Central Coast Research Institute For Integrated Care, NSW, Australia, AU
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Cassie Curryer,

Central Coast Research Institute For Integrated Care, NSW, Australia, AU
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Zoi Triandafilidis,

Central Coast Research Institute For Integrated Care, NSW, Australia, AU
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Sarah Jeong,

Central Coast Research Institute For Integrated Care, NSW, Australia, AU
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Sally Carr,

Central Coast Research Institute For Integrated Care, NSW, Australia, AU
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Daneill Davis

Central Coast Research Institute For Integrated Care, NSW, Australia, AU
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Abstract

Introduction: Dementia is a degenerative and life-limiting illness, but people with dementia in their last year of life are seen less frequently by palliative care services than people with other terminal illnesses. There is a need to understand how better to coordinate care for people with dementia as they reach the end of life.

Aim: This rapid review sought to identify and appraise existing models of end of life care for people with dementia and their carers. The key research questions are (a) What models of end of life care for people with dementia and their carers currently exist? and (b) Which features of these models could be used as the basis for a similar model of care for the Central Coast?

Methods: A rapid realist review methodology was used to identify relevant evidence. The following databases and resources were searched: PubMed, Embase (Ovid), The Cochrane Library, PsycINFO (Ovid), Joanna Briggs Institute, CINAHL (EBSCO), Informit Collection, The Campbell Collection. In addition, Google Scholar, Google (for reports and grey literature) and selected websites of relevant organisations suggested by the subject experts on the review team were searched. The search was limited to the time period 2000 to 2020, in English language only. Included studies must have focused on adults with a diagnosis of dementia and in the last year of life [and] be care service models in any setting (hospital, hospice, home, community). Retrieved evidence was reviewed for in an initial scan by a single reviewer. Title and abstract of remaining references was reviewed in pairs to select articles for full text review and thematic analysis.

Key Findings: 1757 articles were identified via database searches and 84 identified from other sources. Following an initial scan, 261 articles were chosen for review on title and abstract by two researchers each, 46 were selected for full-text review and 23 articles then selected for inclusion, describing 11 different models of care. Initial findings suggest that few models of care had been formally evaluated or sustained over time. Challenges in their development include workforce issues, effective care pathway developments, and funding constraints.

In addition to these findings, a secondary category of articles was also created for systematic reviews and other evidence syntheses examining the components of care models to support better care to people with dementia at the end of life. At the time of writing this ongoing work is undertaking a synthesis of these components to inform the development of a generic framework for the delivery of care services to people with dementia at the end of life.

Conclusions: There has been a significant amount of research into the components of what might constitute ‘best practice’ in end of life care to people with dementia, but significantly less evidence on specific models of care and their impact.

Implications: The evidence review will be combined with the findings of a larger research project designed support the co-production of a new service model for adoption by the palliative care services on the Central Coast, Australia.

How to Cite: Goodwin N, Lewis S, Curryer C, Triandafilidis Z, Jeong S, Carr S, et al.. Models of End of Life Care to Support People with Dementia: Results of an Evidence Review. International Journal of Integrated Care. 2022;22(S3):21. DOI: http://doi.org/10.5334/ijic.ICIC22008
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Published on 04 Nov 2022.

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