MINDCARE: Co-producing a dementia risk reduction program for Culturally & Linguistically Diverse (CALD) communities to improve health self-efficacy

Approximately 96 to 120 adults aged 40 and over from Arabic-, Vietnamese-, Greek-, and Hindi-speaking communities in Australia will participate in a dementia prevention intervention through an educational program, the “MindCare program”, delivered by community peer educators at the sites of five partner organisations. The program is designed to improve self-efficacy, health literacy, and knowledge of dementia risk reduction among community members from culturally and linguistically diverse (CALD) backgrounds. It has been specifically tailored for Australians from Arabic-, Vietnamese-, Greek-, and Hindi-speaking groups. The MindCare program was developed through a comprehensive co-design process involving members of the target communities, clinicians, and service providers. The co-production process occurred in three following stages: The first stage included six co-production workshops conducted in English to develop a multicultural base program. Each workshop lasted approximately two hours and involved 8-12 participants, including consumers and service providers from the Arabic-, Vietnamese-, Greek-, and Hindi-speaking communities. Participants reviewed dementia risk reduction materials and provided feedback on the content, format, and cultural relevance, which was integrated iteratively. The second stage consisted of seven cultural adaptation workshops and five individual sessions, where bilingual research assistants facilitated sessions in the respective languages to tailor the program for each community. Each group session lasted approximately two hours and included 2-10 participants who refined the materials based on cultural and linguistic needs. Following cultural adaptation workshops, the program was circulated to all participants for memberchecking and feedback. Further to this the MindCare program is currently undergoing user testing with up to 15 participants from Hindi, Vietnamese, Arabic and Greek speaking backgrounds as well as sessions in English, User testing sessions (2-3 hours) assess usability, cultural relevance, and engagement to ensure the program is culturally and linguistically appropriate and ready for the trial. The intervention using the MindCare program, as finalised after the above testing with community members, is a 3-hour workshop delivered in person in community settings by bilingual peer educators who are bilingual members of the CALD communities and engaged by the project's partner organisations (Ethnic Communities’ Council of Victoria Multicultural Aged Care, South Western Sydney Local Health District, SydWest Multicultural Services, Umbrella Multicultural Community Care). The workshops provide a brief introduction to dementia, but the main focus is to educate participants about the modifiable lifestyle risk factors that can reduce the risk of developing dementia, and that people can potentially address through simple everyday actions (e.g. getting a hearing check, or making sure to get your cholesterol checked at the GP from time to time). The program includes components to encourage engagement such as discussions, culturally relevant examples, in-language multimedia materials (such as the short films and animations developed by the MovingPictures research team, available at https://www.movingpictures.org.au/), and goal-setting activities where participants set personal health goals related to dementia risk reduction. Participants in the intervention arm will be asked to attend a session provided in their language and complete surveys at three time points: baseline (before the intervention), immediately post-intervention, and six-week post-intervention. The surveys aim to assess changes in self-efficacy, knowledge, and health literacy, using questionnaires adapted from the General Self-Efficacy Scale (GSE) [1], the Knowledge of Dementia Risk Reduction (KoDeRR) survey (developed by the University of Tasmania’s Dementia Research and Education Centre) [2], and the Health Literacy Survey European Questionnaire (HLS-EU-Q16) [3]. These surveys will be built on REDCap or Qualtrics and tested by the research team before the intervention. Community peer educators will be trained by the Lead Investigator and bilingual research assistants on how to deliver the education sessions to community members taking part in the trial. The training will consist of three weekly sessions, each lasting two hours, and will be completed at least two weeks before the intervention begins. Within one week before each educational session (the intervention), a member of the research team, in collaboration with community peer educators, will collect participant responses to the baseline survey (timepoint 1). The training to peer educators will ensure they are equipped to assist in recruiting participants, facilitate the collection of baseline survey responses, and deliver the program in their respective languages. During the workshops, peer educators will also support participants in setting personal health goals, monitor participant progress and provide ongoing support after the workshops, contributing to the program’s overall evaluation. At the education session, each participant will receive a booklet specifically designed for this study, containing presentation slides of the MindCare program, presenter’s notes, materials for goal setting, and a tip sheet in the form of a fridge magnet as a reminder of dementia prevention tips. The intervention will be monitored through the attendance of two research team members (either in person or online). Participants will be encouraged to take home the materials and respond to the immediate post-intervention survey (timepoint 2) within two days of attending the session. The evaluation of changes in self-efficacy, knowledge, and health literacy will be conducted approximately six weeks after the intervention (timepoint 3). A member of the research team will contact participants and send them the 6-week follow-up survey to collect quantitative data about knowledge retention, lifestyle changes related to dementia risk reduction, and overall progress on their health goals. The study will aim to recruit a similar number of participants (approximately 24~30) from each community to ensure equitable representation across the four groups. By delivering the program in participants’ native languages and engaging community peer educators, the MindCare program seeks to ensure cultural relevance and accessibility while promoting dementia risk reduction within CALD communities. References: [1] Schwarzer, R., & Jerusalem, M. (1995). Generalized Self-Efficacy scale. In J. Weinman, S. Wright, & M. Johnston, Measures in health psychology: A user’s portfolio. Causal and control beliefs (pp. 35-37). Windsor, UK: NFER-NELSON. [2] Eccleston C, Kitsos A, Doherty K. Assessing dementia risk reduction knowledge: development of the KoDeRR instrument (Conference Paper). In: Alzheimer’s Disease Internationditor. 35th Global Conference of Alzheimer’s Disease International: New horizons in dementia. London 2022. [3] Bergman, L., Nilsson, U., Dahlberg, K., Jaensson, M., & Wångdahl, J. (2023). Validity and reliability of the Arabic version of the HLS-EU-Q16 and HLS-EU-Q6 questionnaires. BMC Public Health, 23(1), 304.

Approximately 96 to 120 adults aged 40 and over from Arabic-, Vietnamese-, Greek-, and Hindi-speaking communities in Australia will participate in a dementia risk reduction intervention through an educational program, the “MindCare program”, delivered by bilingual community peer educators at the sites of five partner organisations. An additional 3 new collaborators added to ensure sufficient participant numbers. The program is designed to improve self-efficacy, health literacy, and knowledge of dementia risk reduction among community members from culturally and linguistically diverse (CALD) backgrounds. It has been specifically tailored for Arabic-, Vietnamese-, Greek-, and Hindi-speaking communities in Australia. The MindCare program was developed through a comprehensive co-design process involving members of the target communities, clinicians, and service providers. The co-production process occurred in three following stages: The first stage included six co-production workshops in English to develop a multicultural base program. Each workshop duration is planned to last approximately two hours and involve 8-12 participants, including consumers and service providers from the Arabic-, Vietnamese-, Greek-, and Hindi-speaking communities. Participants will review dementia risk reduction materials and provide feedback on the content, format, and cultural relevance, which will be integrated iteratively. The second stage consists of cultural adaptation workshops. 1-2 workshops with approximately 8-12 participants per language will be undertaken, where bilingual research assistants facilitate sessions in the respective languages to tailor the program for each community. Each group session will be of 2-hour duration, and the aim is to refine materials based on cultural and linguistic needs. During this phase, the cultural adaptation workshops had to be modified to suit participants' needs and availability. A total of 5 workshops with smaller numbers of participants with between 4-11 participants, 8 individual consultations, and 2 small consultations with 2-3 participants were undertaken. Following cultural adaptation workshops, the program will be circulated to all participants for member-checking and feedback. Further to this, the MindCare program will be user tested with up to 15 participants from Hindi, Vietnamese, Arabic and Greek speaking backgrounds as well as sessions in English. User testing sessions (2 hours) assessed usability, cultural relevance, and engagement to ensure the program is culturally and linguistically appropriate and ready for the trial. The intervention using the MindCare program, as finalised after the above testing with community members, is a 2.5-hour workshop delivered in person in community settings by bilingual peer educators who are bilingual members of the CALD communities and engaged by the project's partner organisations (Ethnic Communities’ Council of Victoria, Multicultural Aged Care, South Western Sydney Local Health District, SydWest Multicultural Services, Umbrella Multicultural Community Care. We further added new collaborators including the Muslim Women’s Association of South Australia, the Hellenic Community of Western Australia, and the Greek Welfare Centre in Sydney (NSW) to support workshop delivery. The MindCare program provides a brief introduction to dementia, but the main focus is to educate participants about the modifiable lifestyle risk factors that can reduce the risk of developing dementia (based on the Lancet Review Dementia prevention, intervention, and care, 2024), and that people can potentially address through simple everyday actions (e.g. getting a hearing check, or making sure to get your cholesterol checked at the GP from time to time). The program includes components to encourage engagement such as discussions, culturally relevant examples, in-language multimedia materials (such as the short films and animations previously developed by members of the research team, available at www.mindcare.org.au), and goal-setting activities where participants set personal health goals related to dementia risk reduction. Participants in the intervention arm will be asked to attend an in-person session provided in their language and complete surveys at three time points: baseline (before the intervention), immediately post-intervention, and six-week post-intervention. The surveys aim to assess changes in the primary outcome which is self-efficacy, as well as the secondary outcomes including knowledge of dementia risk reduction, and health literacy, using questionnaires adapted from the General Self-Efficacy Scale (GSE) [1], the Knowledge of Dementia Risk Reduction (KoDeRR) survey (developed by the University of Tasmania’s Dementia Research and Education Centre) [2], and the Health Literacy Survey European Questionnaire (HLS-EU-Q16) [3]. These surveys will be built on REDCap and tested by the research team before the intervention. During the trial, participants will have the option to be assisted by the bilingual research team to complete the questionnaires/research documentation in language by phone to support participants with low digital literacy. Community peer educators will be trained by the Lead Investigator and project manager on how to deliver the education sessions to community members taking part in the trial. The training will consist of three weekly sessions, each lasting two hours, and will be completed at least two weeks before the intervention begins. Within one week before each educational session (the intervention), a member of the research team, in collaboration with community peer educators, will collect participant responses to the baseline survey (timepoint 1). The training to peer educators will ensure they are equipped to assist in recruiting participants, facilitate the collection of baseline survey responses, and deliver the program in their respective languages. During the workshops, peer educators will also support participants in setting personal health goals, monitor participant progress and provide ongoing support after the workshops, contributing to the program’s overall evaluation. A minor modification to the community educator training was implemented in response to partner organisation requests, to be less time-consuming and burdensome for educators. This meant that ~2-3 weeks before their scheduled workshop community educators received a 1.5-2 hour training session facilitated by the Lead investigator and project manager, and were provided with video recordings of entire MindCare Program in their own language, which contained highly detailed presenter notes (verbatim presentation possible), a detailed facilitator manual, and were provided with the opportunity to organise follow up sessions, and ad-hoc support leading up to their designated workshop. At the MindCare education session (intervention), each participant will receive a booklet specifically designed for this study, containing presentation slides of the MindCare program, and materials for goal setting in a bound booklet format, and a tip sheet in the form of a fridge magnet as a reminder of dementia prevention (risk reduction) tips. Participant materials were bilingual (English and in-language). The intervention will be monitored through the attendance of two research team members (either in person or online). Participants will be encouraged to take home the materials and respond to the immediate post-intervention survey (timepoint 2) within two days of attending the session. Participants completed the post-intervention survey immediately after the survey to allow support from the research team should this be required. The evaluation of changes in self-efficacy (primary outcome), knowledge, and health literacy will be conducted approximately six weeks after the intervention (timepoint 3). A member of the research team will contact participants and send them the 6-week follow-up survey to collect quantitative data about knowledge retention, lifestyle changes related to dementia risk reduction, and overall progress on their health goals. Participants had the opportunity to be contacted by a research team member who was fluent in their language, to support collection of t3 data (6-week follow-up). This was implemented to support those participants with limited digital literacy and reduce participant burden. The study will aim to recruit a similar number of participants (approximately 24~30) from each community to ensure equitable representation across the four groups. By delivering the program in participants’ native languages and engaging community peer educators, the MindCare program seeks to ensure cultural relevance and accessibility while promoting dementia risk reduction within CALD communities. References: [1] Schwarzer, R., & Jerusalem, M. (1995). Generalized Self-Efficacy scale. In J. Weinman, S. Wright, & M. Johnston, Measures in health psychology: A user’s portfolio. Causal and control beliefs (pp. 35-37). Windsor, UK: NFER-NELSON. [2] Eccleston C, Kitsos A, Doherty K. Assessing dementia risk reduction knowledge: development of the KoDeRR instrument (Conference Paper). In: Alzheimer’s Disease International. 35th Global Conference of Alzheimer’s Disease International: New horizons in dementia. London 2022. [3] Bergman, L., Nilsson, U., Dahlberg, K., Jaensson, M., & Wångdahl, J. (2023). Validity and reliability of the Arabic version of the HLS-EU-Q16 and HLS-EU-Q6 questionnaires. BMC Public Health, 23(1), 304.