Focused Attention on Positive Aspects of Dementia Care in Culturally and Linguistically Diverse Communities: Qualitative Insights from Australia.

OBJECTIVES: Dementia care scholarship focuses on care challenges and less on positive aspects of care, especially among culturally and linguistically diverse (CALD) carers outside the United States. This article investigates positive aspects of dementia care across eight CALD groups in Australia. METHODS: We analyzed interviews of 112 family carers using a four-domain framework covering: a sense of personal growth, feelings of mutuality, increases in family cohesion, and a sense of personal accomplishment. RESULTS: Positive associations with care are derived from past relationships, feelings of mutual obligation, valuing changed relationships and enjoying spending time with the person with dementia. Positive aspects of care were not associated with increased family cohesion except in Vietnamese and Arab families; neither was use of ethno-specific residential aged care, except for Greek and Italian families. Religion and spirituality as a coping and comforting mechanism was inconsistently expressed. CONCLUSIONS: The study reveals the multi-dimensional nature of care, what resonates, and diverges across CALD populations. Knowing which parts of the framework apply and which do not is useful for interventions seeking to enhance positive aspects of care. CLINICAL IMPLICATIONS: Migrant populations are varied and dynamic, and practitioners should be mindful of differences within and between ethnic minority groups.

The impact of training on communication quality during interpreter-mediated cognitive assessments: Study protocol for a randomized controlled trial.

Introduction: The number of Australian residents with dementia is projected to double by 2058, with 28% currently being migrants from non-Anglophone countries. There will be growing demand for professional interpreters for cognitive assessments and dementia-related health consultations in the future. Interpreting cognitive assessments can be challenging for interpreters; inaccurate interpreting can influence assessment outcomes. The Improving Interpreting for Dementia Assessments (MINDSET) project will upskill interpreters through an online training course in dementia and cognitive assessments. The training has been co-designed with key stakeholders from the interpreting sector, dementia-related services, and family caregivers, and has been user-tested with 12 interpreters. The training aims to improve the quality of interpreter-mediated communication during cognitive assessments, and thereby improve the accuracy and acceptability of cognitive assessments with older people who have limited English proficiency. Methods: We are conducting a single-blinded randomized controlled trial to evaluate the effectiveness of the training. We aim to enroll 150 interpreters, and allocate them to equal parallel groups. The intervention group will receive access to the MINDSET training, which comprises 4 hours of resources covering five domains: dementia knowledge, cross-cultural communication, briefings and debriefings, interpreting skills, and interpreting ethics. The control group will be assigned to a wait list, and will receive access to the training after the trial. Participants will be assessed according to the five domains, via the Dementia Knowledge and Assessment Scale, multiple-choice questions, video-simulated assessments, and ethical scenarios. Assessments will occur at baseline (prior to the intervention group completing the training), 3 months after enrollment, and 6 months after enrollment. Results: The trial is ongoing. Recruitment began in June 2022. Discussion: This is the first time a training resource for interpreters in dementia has been trialed. If successful it may represent a technologically innovative way to offer training to both trainee and practicing interpreters. Highlights: Interpreters are crucial in facilitating cognitive assessments for allophone speakers.Interpreters would benefit from training to improve assessment accuracy.Our study has co-designed specialized dementia training for interpreters.This is a protocol to evaluate the training's efficacy in a randomized controlled trial.

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

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.

"The mind may go, but the heart knows": Emotional care by ethnic minority carers of people living with dementia.

Drawing on the sociology of emotions, this article investigates the socially and culturally mediated nature of emotions and emotional care within 93 ethnic minority carers' narratives of dementia care. Adding to the cross-cultural literatures on the sociology of emotions and dementia care respectively, our analysis showed that 'signals' of dementia to family carers were often emotional outbursts of anger by the person with dementia. These displays, in turn, created conflict, and aroused emotions such as shame, anger, and depression among carers. To mitigate these tendencies, carers enacted emotional management, which centered on reducing the gravity of negative emotions felt by the person with dementia, and affording them the social space to maintain a positive disposition. To create this positive emotional space, carers deployed different strategies. Some mobilized medical discourses to diffuse the emotional and moral significance of their relative's behavior and enable emotional distantiation. Others conceived of people with dementia as 'childlike' and requiring their protection from emotional negativity. Although, such efforts work took a toll on carers' emotional energies, it was considered enabling, therapeutic, and integral to care. Such emotional work departs from academic and advocacy efforts that see such behavior as patronizing and infantilizing, and underscores the need for more nuanced discussion around emotions and dementia care in ethnic minority families.

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

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 symbolic mediation of patient trust: Transnational health-seeking among Indian-Australians.

This article explores whether this extension of treatment and medication possibilities, owing to greater transnational movement of goods and people, presents increasing challenges for maintaining patients' trust within nationally-bound healthcare systems, such as in Australia. We ran focus groups in Melbourne from June 2012 to June 2013 with 34 Indian migrants to Australia. Our findings illustrate discrepancies between the symbolic mediation of trust within Indian and Australian healthcare encounters. We find that Indian participants associated authoritative and decisive self-presentation by doctors with medical competence, conflicting with Western patient choice models which exalt patient autonomy and agency. We also find that trust in Indian healthcare encounters is mediated through the symbolic deployment of "strong medication" and the engendering of "hope" in patients. Australian doctors' failure to deploy these symbols in the same way contributes to distrust that Indian participants express towards Australian health professionals and healthcare systems. We conclude that in situations where patients have less familiarity with the symbolic repertoire shared by the majority of users of a national healthcare system, such as can be the case with recent migrants, difficulties and misunderstandings may arise in negotiating trust, providing a potential motivator for seeking alternatives transnationally.