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

Abstract

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.

Health literacy and older adults: Findings from a national population‐based survey

“…Competency in English is essential for full participation in Australian life, 46 including navigation of complex health systems. Yet many older migrants have low English proficiency; a well‐documented barrier to health and care seeking and capacity to procure information in languages other than English 47–49 . Future research should consider why pre‐ and post‐migration events correlate poorly with health literacy but strongly with health outcomes or whether migrant health outcomes and health literacy are only peripherally linked, with other factors (e.g.…”

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].…”

“…Consequently, most ethnically diverse people with dementia are cared for at home, by family (mostly women). Alongside intimate personal care duties, many family carers are also tasked with facilitating external support (e.g., GP visits), language interpretation between older people and providers, and advocating for their parent's rights to often rigid and unsympathetic health, aged care, and welfare systems [6,7,10 ▪▪ ,11,13]. Collectively these efforts can adversely affect carers’ mental and physical health, productivity and income, and limit their opportunities to socialise.…”

“…This is a challenge for mainstream and ethno-specific providers. The latter tend to be more effective as they provide more holistic, wrap-around care for ethnically diverse families [10 ▪▪ ]. Often this is because they function as ‘boundary crossers,’ that is, they operate at the intersections of culture and dementia care, community and systems, skilfully employing different languages, as well as clinical and cultural terminology to establish trust and rapport while aiding in service navigation to enhance accessibility [39 ▪▪ ].…”

“…Health and aged care systems in high-income countries tend to be largely western-centric, include lengthy wait-times, are bureaucratic and often fragmented [10 ▪▪ ]. Often ethnically diverse families struggle to engage with these systems, particularly if they cannot connect with a provider prepared to act as a ‘boundary crosser’ for them and/or family carers, have limited formal education and capacity to navigate and advocate for their relative with dementia [10 ▪▪ ].…”