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Advance care plans in dementia: user-centred design
Karen Harrison Dening1, Emma Castle2, Caroline Scates2
1Research and Publications, Dementia UK, London, UK karen.harrison-dening@dementiauk.org.
BMJ Supportive & Palliative Care
|February 10, 2019
Summary
Advance care planning (ACP) materials were co-designed with people with dementia and their family carers. This user-centered approach ensures dementia care planning better reflects individual wishes at the end of life.
Area of Science:
- Palliative Care
- Gerontology
- Health Services Research
Background:
- Dementia is often not recognized as a life-limiting condition necessitating palliative care.
- Providing effective palliative and end-of-life care for individuals with dementia presents significant challenges.
- Advance care planning (ACP) can empower individuals with dementia to influence their end-of-life care.
Purpose of the Study:
- To involve people with dementia and their family carers in the co-design of an ACP guide and template.
- To prepare for future studies focusing on communication processes within ACP.
Main Methods:
- A user-centered design process was employed by Dementia UK.
- The development and review cycle involved people with dementia, family carers, and Admiral Nurses.
- Key stakeholders collaborated in creating the ACP guide and template.
Main Results:
- The project successfully developed an Advance Care Planning (ACP) guide and template.
- Nine iterative stages of development and review were completed.
Conclusions:
- Co-production, utilizing a user-centered design, provides a structured and inclusive method for developing ACP resources.
- This approach enhances the suitability and relevance of ACP materials for individuals with dementia and their families.
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