Work

Redefining the meaning of dementia: A qualitative study of meaning, stigma, and care experiences among family and professional carers

Year: 2026

Type: article

Abstract: 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.

Source: Alzheimer s & Dementia Diagnosis Assessment & Disease Monitoring

DOI: 10.1002/dad2.70521

Authors: Anna Tjin, I Made Pasek Saradahtam Bendesa, Robert Stewart, Thang Leng Leng

Institutions: National University of Singapore, King's College London, South London and Maudsley NHS Foundation Trust

Language: English

Topic: Dementia and Cognitive Impairment Research

Subfield: Psychiatry and Mental health

Field: Medicine

Domain: Health Sciences

SDG: Good health and well-being

Open Access status: gold

Estimated APC paid: $2,540