Narrative accounts of lived experiences in young onset dementia
Research type
Research Study
Full title
Young onset dementia and intersectionality: exploring lived experiences through personal narrative accounts.
IRAS ID
361371
Contact name
Abigail Moon
Contact email
Sponsor organisation
University of West London
Duration of Study in the UK
3 years, 1 months, 28 days
Research summary
Young onset dementia refers to dementia diagnosed before the age of 65. People living with young onset dementia often face different challenges compared to those in later life, such as changes to employment, financial pressures, family responsibilities and limited access to age-appropriate support.
Currently, dementia research and policy mainly focus on people diagnosed after the age of 65. As a result, the voices and needs of those living with young onset dementia are often overlooked. Research studies also primarily involve people with similar social and demographic circumstances, and the experiences of people from marginalised groups are underrepresented. This creates gaps in our understanding of how young onset dementia affects people differently depending on their identity and background.
People’s identities are complex and interconnected. An individual's experience is influenced by their diagnosis, and by factors such as their socioeconomic circumstances, gender, ethnicity and their social identity. These overlapping aspects of identity can shape an individual’s experience of living with young onset dementia, including their access to support, power and resources.The main aim of this study is to explore the experiences of people living with young onset dementia across England by analysing their personal narrative accounts. It will place particular focus on how background, identity and socioeconomic circumstances combine to shape these experiences. We will invite people living with young onset dementia to share their experiences in the form of a written story. We will then meet with the same individuals again to discuss their story in greater depth. There is a national priority to involve marginalised and underserved groups in health research, which the present study responds to directly. The findings may help to inform more inclusive research, care practices and policies that better reflect the unique experiences of diverse populations living with young onset dementia.
REC name
London - Westminster Research Ethics Committee
REC reference
25/PR/1609
Date of REC Opinion
14 Jan 2026
REC opinion
Further Information Favourable Opinion