Alison Beard

This study explores the measurable barriers hindering social inclusion, for individuals living with young
onset dementia (YOD) and their families. Drawing on social constructionism and feminist perspectives,
qualitative methods including semi-structured interviews, focus groups, and a case study were
employed to delve into subjective experiences and perceptions.
Narratives from nine individuals living with YOD and five family members, all engaged in support groups
within North West England, shed light on the explored barriers to social inclusion. The study examines
the impact of role, occupation, self-identity, and altered social interactions, alongside the recognition
of YOD as a disability.
Using Braun and Clarke’s thematic analysis (2006), three prominent themes emerged from the
findings: i) acknowledging a diagnosis of YOD ii) adapting to change and iii) resilience. These themes
intersect to emphasise the necessity of a deeper comprehension of signs and symptoms of dementia
in younger individuals, timely diagnosis irrespective of age, and recognition of the distinct challenges
faced by younger individuals living with dementia.
To facilitate change, the Circle of Empowerment model is proposed, offering recommendations for
policy and practice adjustments. These include reframing YOD as a disability and recognising that
individuals living with YOD can still learn, engage socially, and find purpose and value in society.
Embracing the Circle of Empowerment model in practice, alongside acknowledging the benefits of
specialised support within YOD-specific communities, holds the promise of fostering a more positive
experience for individuals living with YOD, wherein individuals feel valued and integrated into society.