Beyond crisis: Enacted sense-making among ethnic minority carers of people with dementia in Australia.

Brijnath, Bianca; Gilbert, Andrew Simon; Kent, Mike; Ellis, Katie; Browning, Colette; Goeman, Dianne; Adams, Jon; Antoniades, Josefine

Brijnath, Bianca; Gilbert, Andrew Simon; Kent, Mike; Ellis, Katie; Browning, Colette; Goeman, Dianne; Adams, Jon; Antoniades, Josefine.

Afiliación

Brijnath B; 110764National Ageing Research Institute, Australia; School of Occupational Therapy and Social Work, 1649Curtin University, Australia; Department of General Practice, 2541Monash University, Australia.
Gilbert AS; 110764National Ageing Research Institute, Australia; Department of Social Inquiry, 2080La Trobe University, Australia.
Kent M; Centre for Culture and Technology, 1649Curtin University, Australia.
Ellis K; Centre for Culture and Technology, 1649Curtin University, Australia.
Browning C; School of Nursing and Healthcare Professions, 1458Federation University, Australia; Centre for Research on Ageing, Health and Wellbeing, Australian National University, Australia.
Goeman D; School of Medicine and Public Health, University of Newcastle, Australia; Central Clinical School, Faculty of Medicine, Nursing and Health Sciences, Monash University, Australia.
Adams J; Discipline of Public Health, Faculty of Health, 1994University of Technology Sydney, Australia.
Antoniades J; 110764National Ageing Research Institute, Australia.

Dementia (London) ; 20(6): 1910-1924, 2021 Aug.

Article en En | MEDLINE | ID: mdl-33228396

RESUMEN

The 'family crisis' narrative is frequently used in dementia studies to explain ethnic minority families' pathways to health and aged care and why there is delayed dementia diagnoses in ethnic minority communities. Such narratives may obscure the family carers' agency in negotiating services and managing personal, social and structural burdens in the lead up to diagnosis. To illuminate agency, this article describes ethnic minority families' pathways to a dementia diagnosis using the concept of sense-making. Three case studies were drawn from 56 video interviews with family carers of older adults with dementia from Chinese, Arab and Indian backgrounds. Interviews were conducted across Australia from February to August 2018, then translated, transcribed and thematically analysed. Findings suggest families did not enter into formal care because of a crisis, instead navigating fragmented systems and conflicting advice to obtain a dementia diagnosis and access to relevant care. This experience was driven by sense-making (a search for plausible explanations) that involved family carers interpreting discrepant cues in changes to the behaviour of the person with dementia over time, managing conflicting (medical) advice about these discrepancies and reinterpreting their relationships with hindsight. The sense-making concept offers a more constructive hermeneutic than the 'family crisis' narrative as it illuminates the agency of carers' in understanding changed behaviours, negotiating services and managing personal, social and structural barriers pre-diagnosis. The concept also demonstrates the need for a multimodal approach to promoting timely diagnosis of dementia in ethnic minority communities through dementia awareness and literacy campaigns as well as initiatives that address structural inequities.

Asunto(s)

Cuidadores; Demencia; Anciano; Australia; Etnicidad; Humanos; Grupos Minoritarios

Palabras clave

dementia; diagnosis; ethnic minority; family crisis; sense-making; system navigation

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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Cuidadores / Demencia Tipo de estudio: Qualitative_research Límite: Aged / Humans País/Región como asunto: Oceania Idioma: En Revista: Dementia (London) Año: 2021 Tipo del documento: Article País de afiliación: Australia Pais de publicación: Reino Unido

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