Social health experiences and support needs of people living with young-onset dementia: A qualitative study

Wang, Ziyue, Hunter, Andrew, Geoghegan, Carmel, Qureshi, Masood Ahmed, Davis, Martina, Kicks, Hayleigh, & Sezgin, Duygu. Social Health Experiences and Support Needs of People Living With Young-Onset Dementia: A Qualitative Study. Dementia, https://doi.org/10.1177/14713012261420036

Abstract

Young-onset dementia presents unique challenges, including employment disruption, financial strain, and stigma, which affect various aspects of social health, such as social frailty and social isolation. However, little is known about the experiences of people living with young-onset dementia regarding social frailty and social isolation, and support needs to improve their social health. This study aimed to explore the lived experiences and support needs on social frailty and social isolation of people living with young-onset dementia, to inform strategies and interventions to improve social health in this population. A descriptive qualitative design was employed. Semi-structured interviews were conducted with 12 community-dwelling individuals living with young-onset dementia in Ireland and the United Kingdom. Participants had been identified as socially frail, socially pre-frail, or socially isolated in a prior survey. Data were collected from December 2024 to March 2025 and analysed thematically. Five themes were identified: (1) Persevering in independence and voice, highlighting autonomy and being heard; (2) Challenges to stability: employment, finance, and family, describing disruptions and need for family-oriented support; (3) Impact on support: living with young-onset dementia and finding hope, disclosing the social and psychological barriers, and the importance of early and empowering information; (4) Exclusion from inclusion: building a dementia-friendly environment, bridging the need for addressing stigma and advocacy for public awareness; and (5) Gaps: Limited support and challenges, demonstrating age-related and geographic inequalities and sustainability challenges in dementia support access for people living with young-onset dementia. People living with young-onset dementia face significant, distinct and complex social health challenges often not addressed by existing dementia services. Their voices must guide the development of age-appropriate dementia care, with inclusive and empowering support systems. Tailored interventions and policies are needed to address social health needs and promote equity in dementia care for younger populations.

Funder

University of Galway
Chinese Scholarship Council

Publisher

SAGE Publications

Rights

CC BY

cb

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