‘What Does Empowerment Mean to You?’: Co-creating an Anthology of Lived Experience in Dementia
Parallel 5
18 November, 2026 2:10 – 3:20 pmMini Presentations: Group 2
Ankita Bhojwani
Research Assistant
Cicely Saunders Institute
Summary
The EMPOWER Dementia Network+ is a dedicated network of lived experts, researchers, community partners and practitioners who work together to ensure fairer and more equal dementia care by tackling inequalities. Core to the Network+ is PLEDGE (People with Lived Experience of Dementia Group – EMPOWER), which comprises three people living with dementia and four family carers. PLEDGE is invaluable to the Network as it shapes and enhances all Network+ activities, ensuring that these are informed by insights and experiences of people affected by dementia.
A creative expression activity was developed by and run with PLEDGE with the aim of exploring the meaning of empowerment among people affected by dementia. The activity was co-designed and led by a PLEDGE member who is a poet living with dementia, alongside a researcher specialising in illustration and creative research methods and a PhD student with a background in anthropology and dementia care. PLEDGE members were invited to respond to the question, “what does ‘empowerment’ mean to you?”, using creative methods of self-expression such as poetry, collages, and artwork.
The initial creative session conducted with PLEDGE was recorded, and outputs were compiled into a creative anthology. The resultant anthology and a toolkit containing the methodology of how the session was conducted were shared with the Network+’s community partners, who were encouraged to conduct the activity within their own settings. This approach enabled wider participation and supported the inclusion of diverse voices, particularly those from communities often underrepresented in dementia research.
All subsequent outputs from other sessions run by community partners were brought together into a larger, evolving anthology that captured varied interpretations of empowerment in the context of dementia. This work demonstrates how creative approaches can meaningfully engage people affected by dementia and generate rich insights into their experiences. By capturing what empowerment means to people affected by dementia, we hope to amplify their voices in shaping research, practice, and policy.