Adaptable and shared: Sense of agency in the experiences of people with dementia

Abstract

While contemporary ageing policies emphasise the importance of supporting older people's agency, research on how people living with dementia themselves perceive and articulate agency remains limited. Existing studies have often focused on the loss of agency or on external factors that enable or constrain it, leaving a gap in understanding the subjective, lived experience of agency as dementia progresses. This study examines the sense of agency among people living with dementia from their own perspectives, utilising Jyrki Jyrkämäs modalities of agency framework. Based on interviews with 19 participants living with dementia (aged 68–85), the research reveals how agency is experienced, maintained and adapted in everyday life. People with dementia express strong desires to maintain control over their daily lives and decision-making, particularly within their home environments and social relationships. Rather than focusing on limitations, they express agency through capabilities, desires and possibilities. Emotional processing, including humour and acceptance, plays a crucial role in adapting to cognitive changes. The study also highlights the importance of relational agency, whereby it is sustained through social connections and support from family members. This interdependence represents not a loss of agency but a reconfiguration that enables individuals to maintain meaningful expressions of agency even as cognitive functions decline. The research contributes to a more nuanced understanding of agency in dementia as constant, adaptive and often shared, with implications for service design and policy that emphasise remaining abilities, relational and emotional support, and the strengthening of both individual and shared forms of agency.