Redefining the meaning of dementia: A qualitative study of meaning, stigma, and care experiences among family and professional carers
Anna Tjin, I Made Pasek Saradahtam Bendesa, Robert Stewart, Thang Leng LengAbstract
INTRODUCTION
As dementia prevalence rises, reliance on carers increases substantially, yet little is known about how carers experience, interpret, and redefine dementia. This qualitative study explored how family and professional carers in the United Kingdom (UK) make sense of dementia, focusing on the meanings they ascribe and how stigma shapes care practices, trajectories, and preferences within cultural, moral, and structural contexts.
METHODS
Purposive sampling recruited 12 family carers and three professional carers across the United Kingdom, and data were analyzed using inductive reflexive thematic analysis. The perspectives of professional carers were included as contextual insights into dementia caregiving experiences rather than for direct comparison with family carers.
RESULTS
Carers described dementia caregiving as a totalising, unpredictable process requiring ongoing reconfiguration of daily life, family roles, and care expectations. Disclosure, reasoning with symptoms, and care‐setting decisions were shaped by cultural, moral, and structural factors, balancing practical needs, autonomy, public responses, and emotional wellbeing.
DISCUSSION
Recognizing the dynamic processes of dementia caregiving within the United Kingdom care context underscores the need for iterative support systems that promote the resilience and quality of life for carers and people with dementia.