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.

'It's Too nice': Adapting iSupport Lite for Ethnically Diverse Family Carers of a Person with Dementia.

OBJECTIVES: Resources to support dementia carers from ethnically diverse families are limited. We explored carers' and service providers' views on adapting the World Health Organization's iSupport Lite messages to meet their needs. METHODS: Six online workshops were conducted with ethnically diverse family carers and service providers (n = 21) from nine linguistic groups across Australia. Recruitment was via convenience and snowball sampling from existing networks. Data were analyzed using thematic analysis. RESULTS: Participants reported that iSupport Lite over-emphasized support from family and friends and made help-seeking sound "too easy". They wanted messages to dispel notions of carers as "superheroes", demonstrate that caring and help-seeking is stressful and time-consuming, and that poor decision-making and relationship breakdown does occur. Feedback was incorporated to co-produce a revised suite of resources. CONCLUSIONS: Beyond language translation, cultural adaptation using co-design provided participants the opportunity to develop more culturally relevant care resources that meet their needs. These resources will be evaluated for clinical and cost-effectiveness in future research. CLINICAL IMPLICATIONS: By design, multilingual resources for carers must incorporate cultural needs to communicate support messages. If this intervention is effective, it could help to reduce dementia care disparities in ethnically diverse populations in Australia and globally.

The realities and expectations of community involvement in COVID-19 research: a Consumer Reference Group perspective.

BACKGROUND: Older adults have been disproportionately impacted by the COVID-19 pandemic. COVID-19 restrictions such as stay at home orders and physical distancing measures have been implemented to reduce older adults' risk of infection, however, such measures can have negative effects on older adults' mental health and social wellbeing. In 2020, the research team received funding as part of an Australian COVID-19 research grants program to investigate how services can better meet the mental health and social support needs of older adults during COVID-19. A Consumer Reference Group (CRG) was established to provide a community perspective on all research activities. MAIN BODY: The CRG comprised of eight older adults aged 65 years and older living in Western Australia. Two members of the CRG were involved in the initial grant proposal, and one member worked for a not-for-profit organisation that provides support and advocacy for older adults. The CRGs role was to provide consumer and community perspectives on the research design, advise on study materials, facilitate links between consumers, the community, and researchers, and advocate on behalf of consumers and the community. The CRG was encouraged to reflect on the research project, their contributions, and the outcomes obtained. In this commentary, we document the CRGs contributions to the project, and record their reflections, including what went well, what were some challenges, the realities of conducting research during COVID-19, and lessons learnt. CONCLUSION: The CRG were active participants in the research process. They shared their perspectives and made important contributions to the project. Through collaboration with the CRG, we were able to reach four key messages, underpinned by consumers lived experiences, that were used to co-develop knowledge translation products. These were disseminated to service providers and older adults.

Since the start of the COVID-19 pandemic, health and social measures have been introduced to reduce the spread of the virus, including lockdowns, physical distancing, and mask mandates. Older adults (aged 60 years and older) are considered particularly vulnerable to COVID-19 and have therefore faced some of the greatest restrictions to reduce their risk of infection. These restrictions can have a negative effect on older adults social and emotional wellbeing. In 2020 the research team received funding to investigate how services could better meet the mental health and social support needs of older Australians during the pandemic. To enable a community perspective on all research activities, a Consumer Reference Group (CRG) of eight older adults living in Western Australia was established. Two of the eight CRG members were involved in the initial grant proposal. The CRG's role was to share their thoughts on the research design, study materials, and to provide links to and advocate for consumers and the community. This commentary reports reflections from the CRC on what went well, what some of the challenges were, the realities of conducting this research during COVID-19, and what lessons were learnt. Through collaboration with the CRG key messages for the research project were reached and used to inform infographics, which were then disseminated to inform service delivery providers and older adults of the research outcomes.