Developing an applied model for making decisions towards the end of life about care for someone with dementia.

<h4>Background</h4>Many people with dementia reach the end-of-life without an advance care plan. Many are not ready to have conversations about end-of-life, and decision-making is left to their families and professionals when they no longer have capacity. Carers may benefit from further...

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Autores principales:	Nathan Davies, Tanisha De Souza, Greta Rait, Jessica Meehan, Elizabeth L Sampson
Formato:	article
Lenguaje:	EN
Publicado:	Public Library of Science (PLoS) 2021
Materias:	Medicine R Science Q
Acceso en línea:	https://doaj.org/article/0af048efe2f34e408fcd892f7f22dc94
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spelling	oai:doaj.org-article:0af048efe2f34e408fcd892f7f22dc942021-12-02T20:11:13ZDeveloping an applied model for making decisions towards the end of life about care for someone with dementia.1932-620310.1371/journal.pone.0252464https://doaj.org/article/0af048efe2f34e408fcd892f7f22dc942021-01-01T00:00:00Zhttps://doi.org/10.1371/journal.pone.0252464https://doaj.org/toc/1932-6203<h4>Background</h4>Many people with dementia reach the end-of-life without an advance care plan. Many are not ready to have conversations about end-of-life, and decision-making is left to their families and professionals when they no longer have capacity. Carers may benefit from further support with decision-making. To develop this support, it is important to understand the decision-making process.<h4>Aim</h4>Explore with family carers and people living with dementia the decision-making process and factors that influence decision-making in dementia end of life care, to produce a model of decision-making in the context of dementia end-of-life care.<h4>Methods</h4>Semi-structured interviews with 21 family carers and 11 people with dementia in England (2018-2019) from memory clinics, general practice and carer organisations. Interviews were analysed using thematic analysis and findings were mapped onto the Interprofessional Shared Decision Making model, refined to produce a modified model of decision-making in dementia.<h4>Results</h4>Participants described five key decisions towards the end-of-life as examples of decision making. We used these experiences to produce a modified model of decision-making in dementia end-of-life-care. The model considers the contextual factors that influence the decision-making process, including: personal preferences; advance care planning and Lasting Power of Attorney; capacity and health and wellbeing of the person with dementia; support from others and clarity of roles. The decision-making process consists of seven inter-linked stages: 1) identifying the decision maker or team; 2) sharing and exchanging information; 3) clarifying values and preferences; 4) managing and considering emotions; 5) considering the feasibility of options; 6) balancing preferred choice and the actual choice; and 7) implementation and reflecting on outcomes.<h4>Conclusions</h4>The modified model breaks down the decision-making process and attempts to simplify the process while capturing the subtle nuances of decision making. It provides a framework for conversations and supporting decisions by carers.Nathan DaviesTanisha De SouzaGreta RaitJessica MeehanElizabeth L SampsonPublic Library of Science (PLoS)articleMedicineRScienceQENPLoS ONE, Vol 16, Iss 5, p e0252464 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	Medicine R Science Q
spellingShingle	Medicine R Science Q Nathan Davies Tanisha De Souza Greta Rait Jessica Meehan Elizabeth L Sampson Developing an applied model for making decisions towards the end of life about care for someone with dementia.
description	<h4>Background</h4>Many people with dementia reach the end-of-life without an advance care plan. Many are not ready to have conversations about end-of-life, and decision-making is left to their families and professionals when they no longer have capacity. Carers may benefit from further support with decision-making. To develop this support, it is important to understand the decision-making process.<h4>Aim</h4>Explore with family carers and people living with dementia the decision-making process and factors that influence decision-making in dementia end of life care, to produce a model of decision-making in the context of dementia end-of-life care.<h4>Methods</h4>Semi-structured interviews with 21 family carers and 11 people with dementia in England (2018-2019) from memory clinics, general practice and carer organisations. Interviews were analysed using thematic analysis and findings were mapped onto the Interprofessional Shared Decision Making model, refined to produce a modified model of decision-making in dementia.<h4>Results</h4>Participants described five key decisions towards the end-of-life as examples of decision making. We used these experiences to produce a modified model of decision-making in dementia end-of-life-care. The model considers the contextual factors that influence the decision-making process, including: personal preferences; advance care planning and Lasting Power of Attorney; capacity and health and wellbeing of the person with dementia; support from others and clarity of roles. The decision-making process consists of seven inter-linked stages: 1) identifying the decision maker or team; 2) sharing and exchanging information; 3) clarifying values and preferences; 4) managing and considering emotions; 5) considering the feasibility of options; 6) balancing preferred choice and the actual choice; and 7) implementation and reflecting on outcomes.<h4>Conclusions</h4>The modified model breaks down the decision-making process and attempts to simplify the process while capturing the subtle nuances of decision making. It provides a framework for conversations and supporting decisions by carers.
format	article
author	Nathan Davies Tanisha De Souza Greta Rait Jessica Meehan Elizabeth L Sampson
author_facet	Nathan Davies Tanisha De Souza Greta Rait Jessica Meehan Elizabeth L Sampson
author_sort	Nathan Davies
title	Developing an applied model for making decisions towards the end of life about care for someone with dementia.
title_short	Developing an applied model for making decisions towards the end of life about care for someone with dementia.
title_full	Developing an applied model for making decisions towards the end of life about care for someone with dementia.
title_fullStr	Developing an applied model for making decisions towards the end of life about care for someone with dementia.
title_full_unstemmed	Developing an applied model for making decisions towards the end of life about care for someone with dementia.
title_sort	developing an applied model for making decisions towards the end of life about care for someone with dementia.
publisher	Public Library of Science (PLoS)
publishDate	2021
url	https://doaj.org/article/0af048efe2f34e408fcd892f7f22dc94
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Developing an applied model for making decisions towards the end of life about care for someone with dementia.

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