Evaluation of a ‘culturally tailored iSupport model’ for carers of people with dementia

This intervention titled 'culturally tailored iSupport model' is designed for carers of people with dementia from culturally and linguistically diverse (CALD) backgrounds. The intervention will be compared to a usual care group. The core components of the 'culturally tailored iSupport model' interventaion are: 1) Facilitator-enabled access to and utilisation of care services: In each study site, CALD carers will be assigned to a facilitator matched for culture and language. They will be encouraged to request individualised support from the facilitator during transition between care types and settings of the people living with dementia (PLWD), at a time of change for PLWD and gain advice to access relevant multidisciplinary care services for timely treatment and care. The facilitator will follow the carers until their preferences needs for support have been met, as: • Individualising support for CALD carers: Guide carers in accessing multidisciplinary services for PLWD on a timely manner; support carers during transitions in care type and setting; assist during times of change or escalating needs in PLWD; facilitate access to culturally appropriate care services to address high dependency, chronic illness, and behavioural challenges—helping prevent crises and hospitalisations; introduce carers to dementia care resources, including iSupport content; build carers’ skills in coping, self-care, problem-solving, and assertiveness through iSupport manual contents; act as cultural brokers to enhance culturally responsive services. • Interacting with CALD Carers: matched by culture and language to build rapport and trust; serve as a consistent point of contact for service navigation; carers initiate contact for one-on-one support based on their needs; duration and frequency of support are flexible and needs-based (run monthly carer support group sessions); offer individual follow-up opportunities, especially for feedback; use phone, WhatsApp or WeChat platform for online interaction or face-to-face interaction; engagement sessions typically last 45–60 mins depending on type and follow-up sessions last 5-10 minutes. • Supporting carers: Provide practical advice on service access and utilisation; continuously follow up until carers' needs are addressed; use structured tools (e.g., carer risk assessment and coaching tools, videos) to identify and respond to needs; gather carer feedback into organisational improvements. Engagement sessions typically last 45–60 mins depending on type and follow-up sessions last 5-10 minutes. • Strategies for monitoring the adherence to the interventions: Facilitators will maintain monthly portfolios which will be reviewed by site leaders. Carers will provide feedback on the intervention they received via a satisfaction survey quarterly and interviews and focus groups at 6 months and 12 months post-baseline. 2. Care support group: In each study site, facilitators will assign carers into support groups of 5-10 carers, matched by cultural and linguistic background. Carers are expected to participate in these monthly meetings for the 12-month duration of the intervention. Each meeting is planned to last between 45 and 60 minutes. Meetings will involve facilitator-led discussions and group sharing, focusing on a standard meeting agenda that includes facilitating positive thoughts of care, managing disease progression and changes, coaching carers in self-care, and caring for their relatives with dementia, allowing carers to share experiences and support each other. Meetings will be recorded for carers in the same group to access. Participant attendance and activities in the support groups will be tracked through the facilitators' monthly portfolios, which will be reviewed and audit, serving as a method to monitor the adherence to the intervention. Facilitators, who share the participants' culture and language, will actively encourage ongoing communication and connection among peers in the group, such as through talking or text messages, to strengthen social support. The text massages will be downloaded as part of research data for analysis by the research team. 3. Psychoeducation: Facilitators will engage CALD carers with the iSupport program in their preferred language and preferred formats (i.e., web-based iSupport, iSupport handbook or iSupport videos). The iSupport program is a psychoeducation program developed and endorsed by the World Health Organization (WHO), designed to enable carers to develop capabilities to manage dementia while reducing their psychological stress. The Australian iSupport program comprises six modules with 29 units, covering areas such as introduction to dementia, being a carer, caring for oneself, providing everyday care, a person-centred approach to changes in behaviour, and engagement in consumer directed care. The program also addresses dementia care from the early stage to the end of life. Carers will be encouraged to complete at least 20 out of 29 relevant learning units. The expected time spent on learning from the iSupport program is around 20 minutes per week. Participants will have access to the iSupport program as part of the 12-month intervention period. Carers will receive a certificate for each unit they complete, which serves as a motivational strategy. Strategies used to assess or monitor adherence include facilitators’ engagement with carers in learning needs assessment to identify relevant units; documenting their activities and outcomes in a structured 'Facilitator's Portfolio'. These portfolios will be reviewed by site leaders and the project team monthly as part of project audit activities. 4. Feedback on services: The facilitators will encourage carers to provide feedback on care services, specifically via monthly carer support group meetings or individual meetings with the facilitators. This feedback will be discussed in their organisation’s quality improvement meetings, and facilitators will act as cultural brokers to assist their organisation to improve culturally tailored care services for PLWD and their carers. The facilitators will also report the organisation’s actions and quality improvement outcomes back to carers in the intervention group.