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Defining end of life in dementia: A systematic review

BACKGROUND: Dementia is a life-limiting condition that affects 50 million people globally. Existing definitions of end of life do not account for the uncertain trajectory of dementia. People living with dementia may live in the advanced stage for several years, or even die before they reach the adva...

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Autores principales: Browne, Bria, Kupeli, Nuriye, Moore, Kirsten J, Sampson, Elizabeth L, Davies, Nathan
Formato: Online Artículo Texto
Lenguaje:English
Publicado: SAGE Publications 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8637358/
https://www.ncbi.nlm.nih.gov/pubmed/34137314
http://dx.doi.org/10.1177/02692163211025457
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author Browne, Bria
Kupeli, Nuriye
Moore, Kirsten J
Sampson, Elizabeth L
Davies, Nathan
author_facet Browne, Bria
Kupeli, Nuriye
Moore, Kirsten J
Sampson, Elizabeth L
Davies, Nathan
author_sort Browne, Bria
collection PubMed
description BACKGROUND: Dementia is a life-limiting condition that affects 50 million people globally. Existing definitions of end of life do not account for the uncertain trajectory of dementia. People living with dementia may live in the advanced stage for several years, or even die before they reach the advanced stage of dementia. AIM: To identify how end of life in people with dementia is measured and conceptualised, and to identify the factors that contribute towards identifying end of life in people with dementia. DESIGN: Systematic review and narrative synthesis. DATA SOURCES: Electronic databases MEDLINE, EMBASE, PsychInfo and CINAHL, were searched in April 2020. Eligible studies included adults with any dementia diagnosis, family carers and healthcare professionals caring for people with dementia and a definition for end of life in dementia. RESULTS: Thirty-three studies met the inclusion criteria. Various cut-off scores from validated tools, estimated prognoses and descriptive definitions were used to define end of life. Most studies used single measure tools which focused on cognition or function. There was no pattern across care settings in how end of life was defined. Healthcare professionals and family carers had difficulty recognising when people with dementia were approaching the end of life. CONCLUSION: End-of-life care and research that focuses only on cognitive and functional decline may fail to recognise the complexities and unmet needs relevant to dementia and end of life. Research and clinical practice should adopt a needs-based approach for people with dementia and not define end of life by stage of disease.
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spelling pubmed-86373582021-12-03 Defining end of life in dementia: A systematic review Browne, Bria Kupeli, Nuriye Moore, Kirsten J Sampson, Elizabeth L Davies, Nathan Palliat Med Original Article BACKGROUND: Dementia is a life-limiting condition that affects 50 million people globally. Existing definitions of end of life do not account for the uncertain trajectory of dementia. People living with dementia may live in the advanced stage for several years, or even die before they reach the advanced stage of dementia. AIM: To identify how end of life in people with dementia is measured and conceptualised, and to identify the factors that contribute towards identifying end of life in people with dementia. DESIGN: Systematic review and narrative synthesis. DATA SOURCES: Electronic databases MEDLINE, EMBASE, PsychInfo and CINAHL, were searched in April 2020. Eligible studies included adults with any dementia diagnosis, family carers and healthcare professionals caring for people with dementia and a definition for end of life in dementia. RESULTS: Thirty-three studies met the inclusion criteria. Various cut-off scores from validated tools, estimated prognoses and descriptive definitions were used to define end of life. Most studies used single measure tools which focused on cognition or function. There was no pattern across care settings in how end of life was defined. Healthcare professionals and family carers had difficulty recognising when people with dementia were approaching the end of life. CONCLUSION: End-of-life care and research that focuses only on cognitive and functional decline may fail to recognise the complexities and unmet needs relevant to dementia and end of life. Research and clinical practice should adopt a needs-based approach for people with dementia and not define end of life by stage of disease. SAGE Publications 2021-06-17 2021-12 /pmc/articles/PMC8637358/ /pubmed/34137314 http://dx.doi.org/10.1177/02692163211025457 Text en © The Author(s) 2021 https://creativecommons.org/licenses/by/4.0/This article is distributed under the terms of the Creative Commons Attribution 4.0 License (https://creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage).
spellingShingle Original Article
Browne, Bria
Kupeli, Nuriye
Moore, Kirsten J
Sampson, Elizabeth L
Davies, Nathan
Defining end of life in dementia: A systematic review
title Defining end of life in dementia: A systematic review
title_full Defining end of life in dementia: A systematic review
title_fullStr Defining end of life in dementia: A systematic review
title_full_unstemmed Defining end of life in dementia: A systematic review
title_short Defining end of life in dementia: A systematic review
title_sort defining end of life in dementia: a systematic review
topic Original Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8637358/
https://www.ncbi.nlm.nih.gov/pubmed/34137314
http://dx.doi.org/10.1177/02692163211025457
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