Beyond crisis : enacted sense-making among ethnic minority carers of people with dementia in Australia
- Authors: Brijnath, Bianca , Gilbert, Andrew , Kent, Mike , Ellis, Katie , Browning, Colette
- Date: 2021
- Type: Text , Journal article
- Relation: Dementia Vol. 20, no. 6 (2021), p. 1910-1924
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- Description: 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. © The Author(s) 2020. **Please note that there are multiple authors for this article therefore only the name of the first 5 including Federation University Australia affiliate “Colette Browning” is provided in this record**
Boundary crossers : how providers facilitate ethnic minority families' access to dementia services
- Authors: Brijnath, Bianca , Gilbert, Andrew , Antoniades, Josefine , Croy, Samantha , Kent, Mike , Ellis, Katie , Browning, Colette , Goeman, Dianne , Adams, Jon
- Date: 2022
- Type: Text , Journal article
- Relation: Journals of Gerontology - Series B Psychological Sciences and Social Sciences Vol. 77, no. 2 (2022), p. 396-406
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- Description: Objectives: Providers who work closely with ethnic minority people with dementia and their families are pivotal in helping them access services. However, few studies have examined how these providers actually do this work. Using the concept of "boundary crossers,"this article investigates the strategies applied by these providers to facilitate access to dementia services for ethnic minority people with dementia and their families. Methods: Between 2017 and 2020, in-depth video-recorded interviews were conducted with 27 health, aged care, and community service providers working with ethnic minority people living with dementia across Australia. Interviews were conducted in one of seven languages and/or in English, then translated and transcribed verbatim into English. The data were analyzed thematically. Results: Family and community stigma associated with dementia and extra-familial care were significant barriers to families engaging with services. To overcome these barriers, participants worked at the boundaries of culture and dementia, community and systems, strategically using English and other vernaculars, clinical and cultural terminology, building trust and rapport, and assisting with service navigation to improve access. Concurrently, they were cognizant of familial boundaries and were careful to provide services that were culturally appropriate without supplanting the families' role. Discussion: In negotiating cultural, social, and professional boundaries, providers undertake multidimensional and complex work that involves education, advocacy, negotiation, navigation, creativity, and emotional engagement. This work is largely undervalued but offers a model of care that facilitates social and community development as well as service integration across health, aged care, and social services. © 2021 The Author(s) 2021. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved.
The experience of structural burden for culturally and linguistically diverse family carers of people living with dementia in Australia
- Authors: Gilbert, Andrew , Antoniades, Josefine , Croy, Samantha , Thodis, Antonia , Adams, Jon , Goeman, Dianne , Browning, Colette , Kent, Mike , Ellis, Katie , Brijnath, Bianca
- Date: 2022
- Type: Text , Journal article
- Relation: Health and Social Care in the community Vol. 30, no. 6 (2022), p. e4492-e4503
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- Description: Evidence suggests that family carers of culturally and linguistically diverse (CALD) people living with dementia experience higher stress and unmet need than the general Australian population. These disparities are often framed as the result of CALD communities failing to seek formal support. Challenging this, we draw on the concept of ‘structural burden’ to explore how the complexity of health and aged systems contribute to the burden that CALD carers experience. We conducted semi‐structured interviews with 104 family carers for CALD people with dementia in Australia, followed by thematic analysis of transcripts. Additional to structural burdens encountered by the general older population, CALD carers faced challenges understanding Australia's Anglo‐centric aged care system, locating culturally appropriate care and were required to translate the languages and operations of health and aged care systems into terms their family members understood. This burden was mitigated by the presence of ethno‐specific organisations and other navigation support. Australia's aged care system has moved towards centralised governance and consumer‐directed care provision. This system involves a confusing array of different programmes and levels, bureaucratic applications and long waiting times. Carers' encounters with these systems demonstrates how some CALD people are being left behind by the current aged care system. While ethno‐specific services can reduce this burden, not all CALD groups are represented. Consequently, improving access to dementia care among CALD populations requires entry point and navigation support that is culturally appropriate and linguistically accessible.