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Advance care plans in dementia: user-centred design
  1. Karen Harrison Dening1,
  2. Emma Castle1,
  3. Caroline Scates1 and
  4. Kay De Vries2
  1. 1Research and Publications, Dementia UK, London, UK
  2. 2Health and Life Sciences, School of Nursing and Midwifery, The Gateway, De Montfort University, Leicester, UK
  1. Correspondence to Karen Harrison Dening, Research & Publications, Dementia UK, London EC3N 1RE, UK; karen.harrison-dening{at}dementiauk.org

Abstract

Objectives Historically, dementia has not been recognised as a life-limiting condition or one that may benefit from a palliative approach to its care. There are many challenges in providing palliative and end-of-life care to this group of people, some of which may be reduced through advance care planning (ACP) to support people with dementia to have a greater influence on their care at end of life. ACP has been defined as a process of discussing and recording of wishes, values and preferences for future care and treatment held between an individual, family members and their care provider(s) that takes effect when the person loses capacity. The objective of this project was to involve people with dementia and their family carers in co-design of ACP guide and template to prepare for further study related to communication processes in ACP.

Methods A user-centred design process cycle of development and review was undertaken by Dementia UK which involved people with dementia, family carers, Admiral Nurses and other key stakeholders in developing an ACP guide and template.

Results Nine cyclical stages were undertaken to achieve the outcome of an ACP guide and template.

Conclusion Co-production using a user-centred design approach offers a structured and inclusive approach to developing ACP materials.Authors:

  • Dementia
  • advance care planning
  • user-centred design methods
  • Admiral Nursing
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Footnotes

  • Contributors The following authors contributed to this paper: KHD and CS conceived of the design and planning and conduct of the UCD. KHD and EC managed the design processes. All authors contributed to writing the manuscript.

  • Funding Funding for this service development project was provided by Dementia UK.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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