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...
Saved in:
| Main Authors: | , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
Public Library of Science (PLoS)
2021-01-01
|
| Series: | PLoS ONE |
| Online Access: | https://journals.plos.org/plosone/article/file?id=10.1371/journal.pone.0252464&type=printable |
| Tags: |
Add Tag
No Tags, Be the first to tag this record!
|
| _version_ | 1850181369559252992 |
|---|---|
| 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 |
| collection | DOAJ |
| 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 |
| id | doaj-art-0af048efe2f34e408fcd892f7f22dc94 |
| institution | OA Journals |
| issn | 1932-6203 |
| language | English |
| publishDate | 2021-01-01 |
| publisher | Public Library of Science (PLoS) |
| record_format | Article |
| series | PLoS ONE |
| spelling | doaj-art-0af048efe2f34e408fcd892f7f22dc942025-08-20T02:17:56ZengPublic Library of Science (PLoS)PLoS ONE1932-62032021-01-01165e025246410.1371/journal.pone.0252464Developing an applied model for making decisions towards the end of life about care for someone with dementia.Nathan DaviesTanisha De SouzaGreta RaitJessica MeehanElizabeth L Sampson<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.https://journals.plos.org/plosone/article/file?id=10.1371/journal.pone.0252464&type=printable |
| spellingShingle | 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. PLoS ONE |
| title | 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_short | 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 |
| url | https://journals.plos.org/plosone/article/file?id=10.1371/journal.pone.0252464&type=printable |
| work_keys_str_mv | AT nathandavies developinganappliedmodelformakingdecisionstowardstheendoflifeaboutcareforsomeonewithdementia AT tanishadesouza developinganappliedmodelformakingdecisionstowardstheendoflifeaboutcareforsomeonewithdementia AT gretarait developinganappliedmodelformakingdecisionstowardstheendoflifeaboutcareforsomeonewithdementia AT jessicameehan developinganappliedmodelformakingdecisionstowardstheendoflifeaboutcareforsomeonewithdementia AT elizabethlsampson developinganappliedmodelformakingdecisionstowardstheendoflifeaboutcareforsomeonewithdementia |