The ANGELA Project: improving diagnosis and post-diagnostic support for younger people with dementia and their families/supporters

Jacqueline Parkes, Vasileios Stamou*, Mary O'Malley, Janet Carter, Jenny La Fontaine, Jan Oyebode, Bridget Jones, Heather Gage

*Corresponding author for this work

Research output: Contribution to journalArticleResearchpeer-review

Abstract

Objectives: Younger people with dementia face significant challenges in gaining access to age- and needs-appropriate support. In this paper, we tell the story so far, of the ANGELA Research Project, which seeks to develop guidance to improve the ‘dementia journey’ for younger people with dementia and their families/supporters. Design: Our story is one of a research group aiming to conduct clinically relevant research to achieve positive changes for younger people with dementia. Our research journey will last 3 years and is now almost one year in. In this article, we aim to convey some of the decisions we have made to date, and what lies ahead for a successful implementation. Methods: So far, we have been forming as a research group and turning our initial ideas into plans that will work in the real world. Our methods for ensuring all elements of the project work well have involved internal and external aspects and processes. These have included involvement with and feedback from experts-by-experience and an advisory panel. Results: To date we have generated a protocol for all the key elements and have launched the Improving Support and Service Use Survey; a national survey gathering evidence from younger people with dementia and their supporters. In this article, we present how we aim to move forward to bring positive real-life changes to the lives of those affected by young onset dementia. Conclusions: There is a cautiously happy ending to this first phase, as we are now collecting data. However, the judgement of whether the Angela Project is a success overall will depend on whether it makes a difference at its conclusion to younger people with dementia and their supporters.
Original languageEnglish
Pages (from-to)26-31
JournalFPOP Bulletin
Volume142
Early online date12 Apr 2018
Publication statusPublished - 2018

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Parkes, J., Stamou, V., O'Malley, M., Carter, J., La Fontaine, J., Oyebode, J., ... Gage, H. (2018). The ANGELA Project: improving diagnosis and post-diagnostic support for younger people with dementia and their families/supporters. FPOP Bulletin, 142, 26-31.
Parkes, Jacqueline ; Stamou, Vasileios ; O'Malley, Mary ; Carter, Janet ; La Fontaine, Jenny ; Oyebode, Jan ; Jones, Bridget ; Gage, Heather. / The ANGELA Project: improving diagnosis and post-diagnostic support for younger people with dementia and their families/supporters. In: FPOP Bulletin. 2018 ; Vol. 142. pp. 26-31.
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abstract = "Objectives: Younger people with dementia face significant challenges in gaining access to age- and needs-appropriate support. In this paper, we tell the story so far, of the ANGELA Research Project, which seeks to develop guidance to improve the ‘dementia journey’ for younger people with dementia and their families/supporters. Design: Our story is one of a research group aiming to conduct clinically relevant research to achieve positive changes for younger people with dementia. Our research journey will last 3 years and is now almost one year in. In this article, we aim to convey some of the decisions we have made to date, and what lies ahead for a successful implementation. Methods: So far, we have been forming as a research group and turning our initial ideas into plans that will work in the real world. Our methods for ensuring all elements of the project work well have involved internal and external aspects and processes. These have included involvement with and feedback from experts-by-experience and an advisory panel. Results: To date we have generated a protocol for all the key elements and have launched the Improving Support and Service Use Survey; a national survey gathering evidence from younger people with dementia and their supporters. In this article, we present how we aim to move forward to bring positive real-life changes to the lives of those affected by young onset dementia. Conclusions: There is a cautiously happy ending to this first phase, as we are now collecting data. However, the judgement of whether the Angela Project is a success overall will depend on whether it makes a difference at its conclusion to younger people with dementia and their supporters.",
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Parkes, J, Stamou, V, O'Malley, M, Carter, J, La Fontaine, J, Oyebode, J, Jones, B & Gage, H 2018, 'The ANGELA Project: improving diagnosis and post-diagnostic support for younger people with dementia and their families/supporters', FPOP Bulletin, vol. 142, pp. 26-31.

The ANGELA Project: improving diagnosis and post-diagnostic support for younger people with dementia and their families/supporters. / Parkes, Jacqueline; Stamou, Vasileios; O'Malley, Mary; Carter, Janet; La Fontaine, Jenny; Oyebode, Jan; Jones, Bridget; Gage, Heather.

In: FPOP Bulletin, Vol. 142, 2018, p. 26-31.

Research output: Contribution to journalArticleResearchpeer-review

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T1 - The ANGELA Project: improving diagnosis and post-diagnostic support for younger people with dementia and their families/supporters

AU - Parkes, Jacqueline

AU - Stamou, Vasileios

AU - O'Malley, Mary

AU - Carter, Janet

AU - La Fontaine, Jenny

AU - Oyebode, Jan

AU - Jones, Bridget

AU - Gage, Heather

PY - 2018

Y1 - 2018

N2 - Objectives: Younger people with dementia face significant challenges in gaining access to age- and needs-appropriate support. In this paper, we tell the story so far, of the ANGELA Research Project, which seeks to develop guidance to improve the ‘dementia journey’ for younger people with dementia and their families/supporters. Design: Our story is one of a research group aiming to conduct clinically relevant research to achieve positive changes for younger people with dementia. Our research journey will last 3 years and is now almost one year in. In this article, we aim to convey some of the decisions we have made to date, and what lies ahead for a successful implementation. Methods: So far, we have been forming as a research group and turning our initial ideas into plans that will work in the real world. Our methods for ensuring all elements of the project work well have involved internal and external aspects and processes. These have included involvement with and feedback from experts-by-experience and an advisory panel. Results: To date we have generated a protocol for all the key elements and have launched the Improving Support and Service Use Survey; a national survey gathering evidence from younger people with dementia and their supporters. In this article, we present how we aim to move forward to bring positive real-life changes to the lives of those affected by young onset dementia. Conclusions: There is a cautiously happy ending to this first phase, as we are now collecting data. However, the judgement of whether the Angela Project is a success overall will depend on whether it makes a difference at its conclusion to younger people with dementia and their supporters.

AB - Objectives: Younger people with dementia face significant challenges in gaining access to age- and needs-appropriate support. In this paper, we tell the story so far, of the ANGELA Research Project, which seeks to develop guidance to improve the ‘dementia journey’ for younger people with dementia and their families/supporters. Design: Our story is one of a research group aiming to conduct clinically relevant research to achieve positive changes for younger people with dementia. Our research journey will last 3 years and is now almost one year in. In this article, we aim to convey some of the decisions we have made to date, and what lies ahead for a successful implementation. Methods: So far, we have been forming as a research group and turning our initial ideas into plans that will work in the real world. Our methods for ensuring all elements of the project work well have involved internal and external aspects and processes. These have included involvement with and feedback from experts-by-experience and an advisory panel. Results: To date we have generated a protocol for all the key elements and have launched the Improving Support and Service Use Survey; a national survey gathering evidence from younger people with dementia and their supporters. In this article, we present how we aim to move forward to bring positive real-life changes to the lives of those affected by young onset dementia. Conclusions: There is a cautiously happy ending to this first phase, as we are now collecting data. However, the judgement of whether the Angela Project is a success overall will depend on whether it makes a difference at its conclusion to younger people with dementia and their supporters.

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EP - 31

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SN - 2396-9652

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