Culturally Adapting Evidence on Dementia Prevention for Ethnically Diverse Communities: Lessons Learnt from co-design.

OBJECTIVES: 40% of dementia cases can be prevented by addressing 12 lifestyle factors. These risk factors have increased presence in ethnic minorities, yet dementia prevention messages have not reached these communities. This article investigates the experience of co-designing a dementia prevention animated film with 9 ethnic groups in Australia. METHODS: Evidence-based recommendations were adapted through an iterative process involving workshops with a stakeholder advisory committee and nine focus groups with 104 participants from the Arabic-, Hindi-, Tamil-, Cantonese-, Mandarin-, Greek-, Italian-, Spanish-, and Vietnamese-speaking communities. Data were analyzed using the Normalization Process Theory. RESULTS: Cultural adaptation involves consideration of the mode of delivery, imagery and tone of the resource being developed; ensuring cultural adequacy; anticipating the need of the end-users; and managing linguistic challenges associated with working across multiple languages. CONCLUSIONS: Learnings from this co-design process offer valuable insights for researchers and program developers who work with ethnic minority groups. CLINICAL IMPLICATIONS: • Adaptation across cultures and languages is a negotiation not a consensus building exercise• Linguistic adaptation requires consideration of the education levels, and linguistic and intergenerational preferences of community members• Co-designing across multiple languages and cultures risks "flattening out" key aspects of cultural specificity.

What is and what ought to be: A meta-synthesis of residential aged care staffs' perspectives on quality care.

BACKGROUND: As places of both residence and work, what constitutes "good quality care" in residential aged care requires consideration of staffs' perspectives. OBJECTIVE: A meta-synthesis of the qualitative literature was conducted exploring residential aged care staff perspectives on "quality of care." METHODS: Six electronic databases were searched for articles that met the screening inclusion criteria. This meta-synthesis was informed by the Preferred Reporting Items for Systematic reviews and Meta-Analyses guidelines, and included studies were critically appraised using JBI SUMARI. Two independent reviewers conducted thematic network mapping and analysis of included articles, with oversight from three additional reviewers. RESULTS: Forty-seven articles were included, with findings summarised into four organising themes and nine basic themes. The four organising themes about quality care from staff perspectives include direct care, professional values and competence, the care environment and organisational/regulatory factors. CONCLUSION: Staff describe a wide range of factors that they perceived to influence the quality of care. Some may feel motivated to leave employment in aged care, due to organisational pressures that make staff unable to uphold what they perceive as an acceptable standard of care. There is tension between professional values and organisation/regulatory factors-regulation should be enacted at a level that supports good practice and staff's moral integrity. RELEVANCE TO CLINICAL PRACTICE: This review found that while person-centred care is now well established as the benchmark of quality care in residential aged care homes, achieving it in reality remains challenged by limitations on staff members' time, resources and sometimes their competencies and the regularity of their employment.

Appropriateness of the EQ-HWB for Use in Residential Aged Care: A Proxy Perspective.

BACKGROUND AND OBJECTIVE: The EQ Health and Wellbeing (EQ-HWB) is a new generic quality-of-life measure for use in evaluating interventions in health, public health and social care. This study aimed to explore proxies' views regarding the appropriateness of the EQ-HWB for measuring residents' quality of life living in residential aged care facilities. METHODS: Qualitative think-aloud and semi-structured interviews were conducted with family members and aged care staff across three facilities in Melbourne, Australia. Proxies completed the 25-item EQ-HWB proxy version 2 (i.e. proxy-person perspective) whilst talking through the reasons for choosing their response. All interviews were audio-recorded and transcribed verbatim. A thematic analysis was used for data analysis. RESULTS: The sample included 29 proxies; nine family members and 20 aged care staff. The first theme summarised proxies' ability to proxy report residents' health and well-being using the EQ-HWB, which highlighted challenges with adherence to the proxy perspective, proxies' limited knowledge about residents, disagreement with residents' self-evaluation and use of heuristics. The second theme reflected feedback on the suitability of the EQ-HWB for use in residential aged care. Although proxies perceived that the EQ-HWB covered important domains, there were concerns about ambiguity, inappropriate examples, double-barrelled items and perceived repetition. Suggestions were made to improve the response options, comprehensiveness, recall period, layout and instructions of the questionnaire. CONCLUSIONS: While the EQ-HWB captures domains relevant to residential aged care, modifications to item wording and examples are necessary to improve its appropriateness. Use of the proxy-person perspective revealed some challenges that require further consideration.

Face Validity of Four Preference-Weighted Quality-of-Life Measures in Residential Aged Care: A Think-Aloud Study.

OBJECTIVE: There is an increased use of preference-weighted quality-of-life measures in residential aged care to guide resource allocation decisions or for quality-of-care assessments. However, little is known about their face validity (i.e., how understandable, appropriate and relevant the measures are 'on their face' when respondents complete them). The aim of this study was to assess the face validity of four preference-weighted measures (i.e., EQ-5D-5L, EQ-HWB, ASCOT, QOL-ACC) in older people living in residential aged care. METHODS: Qualitative cognitive think-aloud interviews were conducted using both concurrent and retrospective think-aloud techniques. To reduce burden, each resident completed two measures, with the four measures randomised across participants. Audio recordings were transcribed and framework analysis was used for data analysis, based on an existing framework derived from the Tourangeau four-stage response model. RESULTS: In total, 24 interviews were conducted with residents living across three residential aged care facilities in Melbourne, Australia. Response issues were identified across all four measures, often related to comprehension and difficulty selecting a response level due to double-barrelled and ambiguous items that have different meanings in the residential aged care context. We also identified issues related to understanding instructions, non-adherence to the recall period, and noted positive responding that requires attention when interpreting the data. CONCLUSIONS: Our findings provide further evidence on the appropriateness of existing measures, indicating numerous response issues that require further research to guide the selection process for research and practice.

"Keeping our distance": Older adults' experiences during year one of the COVID-19 pandemic and lockdown in Australia.

The first year of the COVID-19 pandemic had a profound impact on everyday life in Australia despite relatively low infection rates. Lockdown restrictions were among the harshest in the world, while older adults were portrayed as especially vulnerable by politicians and the media. This study examines the perceptions and experiences of the pandemic and lockdowns among 31 older Australians. We investigated how participants perceived their own vulnerability, their attitudes towards lockdowns and protective behaviors, and how the pandemic affected everyday life. We found that participants were cautious about COVID-19 and vigilant observers of physical distancing. Despite approving of public health guidelines and lockdowns, participants raised concerns about weakening social ties and prolonged social isolation. Those living alone or lacking strong family ties were most likely to report increased loneliness. Most participants nonetheless regarded themselves as "fortunate": they perceived older age as affording them financial, emotional, and relational stability, which insulated them from the worst impacts of the coronavirus pandemic. In their views, financial independence and post-retirement lifestyles helped them adapt to isolation and the disruption of lockdowns.

The MINDSET Study: Co-Designing Training for Interpreters in Dementia and Cognitive Assessments.

There is a growing demand for interpreter-mediated cognitive assessments for dementia. However, most interpreters lack specialist knowledge of dementia and cognitive assessment tools. This can negatively affect the way instructions and responses are conveyed between clinicians and patients, undermining clinicians' ability to accurately assess for cognitive impairment. This article reports on the co-design of an online dementia training package, MINDSET, which aims to address this gap. Two iterative online co-design workshops were conducted in October and November 2021, using a World Café approach. Sixteen clinicians, interpreters, and multilingual family carers of a person with dementia participated. Based on these workshops, training and assessment materials were developed and tested with 12 interpreters from April to June 2022. The training package comprises online modules: 1) Knowledge of Dementia and Australia's Aged Care System, 2) Briefings and Introductions, 3) Interpreting Skills, 4) Interpreting Ethics, and 5) Cross-cultural Communication. The codesign process highlighted divergent perspectives between clinicians and interpreters on an interpreter's role during a cognitive assessment, but it also facilitated negotiation and consensus building, which enriched the training content. The training is now developed and will be evaluated in a randomized control trial and subsequent implementation study.

Improving the lives of ethnically diverse family carers and people living with dementia using digital media resources - Protocol for the Draw-Care randomised controlled trial.

Objectives: Ethnically diverse family carers of people living with dementia (hereafter carers and people with dementia) experience more psychological distress than other carers. To reduce this inequality, culturally adapted, multilingual, evidence-based practical assistance is needed. This paper details the Draw-Care study protocol including a randomised control trial (RCT) to test the effectiveness of a digital intervention comprising a multilingual website, virtual assistant, animated films, and information, on the lives of carers and people with dementia in Australia. Methods: The Draw-Care intervention will be evaluated in a 12-week active waitlist parallel design RCT with 194 carers from Arabic, Cantonese, Greek, Hindi, Italian, Mandarin, Spanish, Tamil, and Vietnamese-speaking language groups. Our intervention was based on the World Health Organization's (WHO) iSupport Lite online carer support messages and was co-designed with carers, people with dementia, service providers, and clinicians. Culturally adapted multilingual digital resources were created in nine languages and English. Results: In Phase I (2022), six co-design workshops with stakeholders and interviews with people with dementia informed the development of the intervention which will be trialled and evaluated in Phases II and III (2023 and 2024). Conclusions: Digital media content is a novel approach to providing cost-effective access to health care information. This study protocol details the three study phases including the RCT of a co-designed, culturally adapted, multilingual, digital intervention for carers and people with dementia to advance the evidence in dementia and digital healthcare research and help meet the needs of carers and people with dementia in Australia and globally.

Video-interpreting for cognitive assessments: An intervention study and micro-costing analysis.

INTRODUCTION: Evidence in the literature demonstrates the reliability of cognitive screening assessments using video technology in English-speaking older populations. However, this has not been tested in older culturally and linguistically diverse (CALD) populations who require an interpreter, and what the associated costs would be. The aim was to determine if the Rowland Universal Dementia Assessment Scale (RUDAS) and the Geriatric Depression Scale (GDS) could be reliably administered over video-interpreting methods compared with face-to-face interpreting. In addition, the study aims to compare the costs of video-interpreting with the costs of face-to-face interpreting. METHODS: We compared similarity of the RUDAS and GDS scores when administered face-to-face and via video-interpreting. The similarity of scores between methods was analysed using paired t-tests and Bland-Altman plots. A costing analysis was done using a micro-costing approach to estimate the costs of video-interpreting compared with face-to-face, extrapolated to a national level. RESULTS: Analysis found no significant differences in the mean assessment scores between video-interpreting and face-to-face (RUDAS mean difference: -0.36; 95% confidence interval (CI): -1.09, 0.38, GDS mean difference: 0.22; 95% CI: -0.38, 0.83). Bland-Altman plots demonstrated that 71% of RUDAS scores and 82% of GDS scores were within the maximum allowed difference of ±2 units. Costing analysis showed a A$7 saving per assessment when using video-interpreting compared with face-to-face, with a total national saving of A$247,350. DISCUSSION: Video-interpreting was found to be as reliable as face-to-face interpreting for both RUDAS and GDS assessments. Cost analysis indicates that video-interpreting is cheaper than face-to-face interpreting.

Boundary Crossers: How Providers Facilitate Ethnic Minority Families' Access to Dementia Services.

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.

Aged Care Residents' Perspectives on Quality of Care in Care Homes: A Systematic Review of Qualitative Evidence.

There is increasing interest in harnessing aged care residents' perspectives to drive quality improvement in aged care homes. We conducted a systematic review of qualitative evidence including literature examining residents' descriptions of "quality of care" in aged care homes, using database searches and screening records according to eligibility criteria. Three independent reviewers conducted quality assessment of forty-six eligible articles and performed thematic synthesis of articles' findings. We distinguish nine key themes describing factors influencing quality care: staffing levels, staff attitude, continuity, routine, environment, decision-making and choice, dignity of risk, activities, and culture and spirituality. While many themes were consistent across studies, residents' prioritization of them varied. Aged care home residents have differing conceptions of quality care as well as heterogeneous and dynamic needs and preferences. Care providers are best able to facilitate quality care when intentional efforts are made to recognize this and tailor delivery of services the individual residents.