Co-Creating Dementia Education: What People Living With Dementia Want Health and Social Care Professionals to Know

AI Summary

Challenge stigma, stereotypes and discrimination to uphold rights and reduce intersectional bias in dementia care.
See the individual and deliver person-centred care that recognises unique needs, preferences and agency.
Enhance language and communication skills, emphasise respectful terminology, active listening and critical reflection on professional assumptions.

TL;DR (AI Generated)

While people with dementia are increasingly involved in the development and delivery of dementia education, decisions about curriculum structure and priorities often remain led by academics with learned rather than lived experience.

To examine how the priorities identified by people with dementia align with existing national expectations for dementia education, the themes were mapped against the Dementia Training Standards Framework (DTSF).

The findings demonstrate how people living with dementia can play a central role in shaping dementia education, identifying priorities that both align with and extend existing curriculum standards.

Basic summary

Dementia (London). 2026 Nov 13:14713012261505526. doi: 10.1177/14713012261505526. Online ahead of print.

ABSTRACT

There is growing recognition that high-quality dementia education must be shaped by the expertise of those with lived experience. While people with dementia are increasingly involved in the development and delivery of dementia education, decisions about curriculum structure and priorities often remain led by academics with learned rather than lived experience. This paper addresses that gap by placing people with dementia at the centre of curriculum creation. In partnership with educators, people with dementia shared their insights into what health and social care professionals need to know, understand, and enact in practice to provide effective care. Nineteen online workshops were conducted with 22 people living with dementia in the United Kingdom, and two academics over an 18-month period (between January 2022 and September 2023). Three priority areas were identified, refined and validated through an iterative consensus process and thematic analysis: (1) Challenging stigma, stereotypes, and discrimination; (2) Seeing the individual and providing person-centred care; and (3) Enhancing language and communication. These priorities became the foundation of a new postgraduate module co-created through lived and learned experience. To examine how the priorities identified by people with dementia align with existing national expectations for dementia education, the themes were mapped against the Dementia Training Standards Framework (DTSF). There was strong alignment with key framework domains, particularly equality and inclusion, person-centred care, and communication, while also highlighting meaningful gaps. The co-created priorities emphasised critical reflection on professional assumptions, intersectional stigma and rights-based practice across all levels of training. The findings demonstrate how people living with dementia can play a central role in shaping dementia education, identifying priorities that both align with and extend existing curriculum standards. They highlight the value of merging lived and learned experience to ensure dementia education reflects what matters most to those living with the condition.

PMID:43024848 | DOI:10.1177/14713012261505526

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