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

Abstract

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.

Inclusive dementia care for ethnically diverse families

“…Ethnically diverse communities are less likely to receive messages related to dementia prevention, early diagnosis, referral to specialist care, be prescribed cholinesterase inhibitors, and participate in dementia clinical trials [3 ▪▪ ,4,5]. They also have few culturally appropriate home- and community-based services, insufficient language support, and encounter greater difficulties navigating complex health and aged care systems [6–9,10 ▪▪ ,11]. Past experiences of discrimination and conditions of migration also deter help-seeking and create mistrust of formal services [6,9,12].…”

The experience of structural burden for culturally and linguistically diverse family carers of people living with dementia in Australia

“…However, people from culturally and linguistically diverse (CALD) backgrounds may face additional challenges when engaging with systems designed for the cultural and linguistic majority. Recent research highlights structural issues, including lack of culturally appropriate options, inadequate language support, sub‐optimal care from GPs and complex and fragmented pathways, as barriers to engagement with formal dementia care (Baghirathan et al, 2020 ; Berdai Chaouni & De Donder, 2019 ; Bernstein et al, 2020 ; Brijnath et al, 2021 ; Carlsson & Pijpers, 2021 ; Lee et al, 2011 ; Nielsen et al, 2021 ). Navigating and accessing support often falls on older adult children, who are the key seekers and facilitators of formal care (Berdai Chaouni & De Donder, 2019 ; Czapka & Sagbakken, 2020 ; Nielsen et al, 2021 ), and may be required to perform language interpreting between their older parents and providers (Baghirathan et al, 2020 ; Mukadam et al, 2011 ; Shanley et al, 2012 ).…”

The role of demographic change in explaining the growth of Australia's older migrant population living with dementia, 2016–2051

“…7,8 Dementia may be experienced differently by the individual migrants and their families and communities. [9][10][11][12][13][14] Relative to nonmigrants, migrants are less likely to receive…”

“…In the context of population ageing, increasing birthplace heterogeneity and shifting English language proficiency in migrant‐receiving high income countries like Australia, there is a need for dementia services to be more inclusive 7,8 . Dementia may be experienced differently by the individual migrants and their families and communities 9-14 . Relative to non‐migrants, migrants are less likely to receive messages related to prevention, more likely to be diagnosed at an advanced stage of their illness, and when diagnosed with dementia, less likely to be prescribed anti‐dementia medication, use long‐term care or have access to culturally appropriate services 4,11,15,16 .…”

“…Dementia may be experienced differently by the individual migrants and their families and communities 9-14 . Relative to non‐migrants, migrants are less likely to receive messages related to prevention, more likely to be diagnosed at an advanced stage of their illness, and when diagnosed with dementia, less likely to be prescribed anti‐dementia medication, use long‐term care or have access to culturally appropriate services 4,11,15,16 . Enumerating differences between migrant groups and modelling for future demographic growth can aid in the development of interventions, therapeutics, and public policy to improve planning for dementia in future populations.…”