Annual progress reports of funded research

Transforming inclusive multidomain dementia prevention lifestyle initiatives for culturally and linguistically diverse older Australians (2024768)

  • Dr Joyce Siette (Chief Investigator A)
  • Western Sydney University
  • Budget: $418,433.40
  • Funding period: 2023 to 2026

Project Synopsis

There is currently an urgent health and industry problem affecting Australia: how to best tackle the challenges of an ever-increasing ageing population by providing best-practice, holistic dementia prevention initiatives that reach and engage with the diverse Australian migrant community.

Culturally and linguistically diverse (CALD) individuals comprise over one-third of Australia’s older population, with an even higher proportion in Western Sydney (80%) yet are heavily under-represented in dementia research due to language barriers, causing gaps in the evidence base. There is a direct need for methodical development and evaluation of new, theory-supported, public health interventions to reduce dementia risk and support healthy ageing for CALD groups.

Informed by behaviour change strategies that promote healthy lifestyle behaviours, the 2021 Australian BRAIN BOOTCAMP initiative was a primary dementia prevention intervention for older adults. Our team found that education, physical prompts, and personalised brain health profiles for English-speaking seniors prompted initiation of brain healthy lifestyle behaviours, increased their dementia literacy, and reduced individual dementia risk over a 3-month period.

This project thus proposes to empirically expand our established dementia risk reduction initiative to include Arabic, Chinese, and Vietnamese older adults, the top 3 largest migrant groups in Western Sydney. A 2-phase approach will be adopted over 3 years to address two aims:

  1. establish 3 co-design teams comprising of older adults, caregivers and healthcare professionals and run four design workshops to deliver an interactive educational campaign targeting language barriers, access to and motivation of culturally-relevant brain healthy lifestyle practices
  2. deliver these public health dementia risk reduction campaigns in Arabic, Chinese and Vietnamese communities across Western Sydney to reduce population-level dementia risk.

Progress report 30 April 2024

The ethics application has been submitted and approved, bilingual staff recruitment successfully completed, ongoing staff training, and data collection set to commence soon.  

Additional milestones achieved include:

  • Regular conduct of weekly project meetings.  
  • Formation of a consumer advisory group.  
  • Initiation of consumer representation as co-chairs of the project meetings and associate reviews.
  • Establishment of the advisory steering committee, with one meeting already held and another scheduled in 2 months.

 

A community based participatory approach to decreasing dementia stigma and increasing help-seeking (2024575)

  • Professor Lee-Fay Low (Chief Investigator A)
  • University of Sydney  
  • Budget: $1,520,259.60
  • Funding period: 2024 to 2028

Project Synopsis

People from culturally and linguistically diverse (CALD) communities present later for dementia diagnosis. This delay is due to less knowledge about dementia, stigma, reduced capacity or confidence to help-seek, and difficulty getting a diagnosis.

The overarching aim of this project is to use community based participatory research to co-design, deliver and evaluate a public health promotion campaign to increase help-seeking for dementia diagnosis in Chinese, Vietnamese and Arabic communities in South-Western Sydney.

Specifically we will:

  1. Develop a consortium of multicultural community organisations
  2.  
    1. Co-design and test messages to persuade CALD communities to help-seek for dementia diagnosis
    2. Co-design and deliver a community-based campaign to increase help-seeking
    3. Evaluate the campaign - for example, using an interrupted time series design and Medicare Benefits Scheme, Pharmaceutical Benefits Scheme, and diagnostic clinic referral data
  3.  
    1. Develop guidance for writing culturally accessible and easily translatable English health materials
    2. Report successful methods for recruitment of CALD participants
  4. Translate findings to change CALD communication practices, research and policy
  5. Outcomes include increased cross-cultural knowledge around barriers and facilitators to dementia help-seeking, and methods to increase help-seeking. We will gain methods to develop culturally applicable and translatable English language resources, and to recruit CALD participants for dementia research.

Progress report 30 April 2024

Interviews or focus groups have been conducted with 68 members of Chinese, Arab and Vietnamese communities. These have been around understanding which symptoms might be dementia, and intentions and barriers to medical help-seeking. We also interviewed 10 stakeholders working with these communities. Common beliefs across communities are that signs of dementia are normal parts of ageing and that those signs are not a medical issue but might be related to lifestyle, fate, or level of family care and is shameful and embarrassing. Communities talked about knowing how and where to seek help and discussed beliefs that not much can be done medically to help a person showing signs of dementia. Some differences in the communities were also identified, for example, the Chinese community were most proactive around information seeking, the Vietnamese community were concerned about keeping their older person at home and protecting them from harm or embarrassment, and the Arabic community expressed the highest level of stigma.

 

A ‘culturally tailored iSupport model’ for carers of people with dementia (2024551)

  • Professor Lily Dongxia Xiao (Chief Investigator A)
  • Flinders University  
  • Budget: $1,555,078.05
  • Funding period: 2023 to 2028

Project Synopsis

Carers from culturally and linguistically diverse (CALD) groups experience structural discrimination in our health and social care systems. This barrier prevents carers from accessing and utilising care services for people living with dementia, attaining dementia care education and social support tailored to their culture and language. We propose a culturally tailored iSupport model (iSupport model) to mitigate these issues. The model includes bilingual and bicultural facilitator-enabled access to care services to meet the care needs of people with dementia, carer support groups and dementia care education for carers using iSupport program in carers’ preferred language and carers’ feedback on care services.

This study includes 4 study aims and collaborates with 7 dementia care service providers. In phase 1, we will co-design strategies and co-create resources with stakeholders to implement the iSupport model using focus groups and interviews (aim 1). In phase 2, we will conduct a pragmatic, multicentre, type 1 hybrid effectiveness-implementation randomised controlled trial with 180 CALD carers from 7 groups of various languages to determine the intervention effectiveness (aim 2), implementation strategies (aim3) and intervention cost-effectiveness (aim 4). Carers in the intervention group will receive the iSupport model intervention for 12 months. We will measure quality of life and health outcomes for carers and care recipients, the use of health and aged care services and the incremental cost per quality adjusted life years gained by the intervention compared to usual care. We will hold focus groups with carers and facilitators and analyse partner organisations’ data to determine the implementation strategies.

This study is much needed because the iSupport model will improve health and quality of life for both carers and care recipients from CALD groups, improve cost-effectiveness of care services, and address structural discrimination in the care system.

Progress report 30 April 2024

We conducted reviews, written comments and focus groups with carers and care workers in the cultural adaptation of Greek, Italian, and Spanish iSupport manuals. We are also exploring strategies to implement the culturally tailored iSupport model in the next study phase using focus groups.  

So far, 20 carers and 20 care workers participated in the study. Five main themes were identified:

  1. 'Using words that are much more widely used by carers': Participants suggest the need to choose words carefully to suit carers with low literacy level in their first language
  2. 'The content of the iSupport is very informative': Participants embrace the iSupport program
  3. 'The module altogether is pretty overwhelming': Participants suggest short videos to outline each of 29 learning unit
  4. 'Learning by seeing examples is really helpful': Participants expect trained facilitator-enabled peer support and coaching activities
  5. 'Organising training and paying for the carers': Carers expect funded skill training to enable them to study in the iSupport program.

The 7 ethno-specific aged care organisations in the project are very supportive. They have engaged carers and care workers in project resource development. Carers and care workers have participated in the review of video scripts, provided video clips in real care setting with permission from people involved. We have also engaged these organisations in the project through regular newsletters to highlight their achievements in dementia care and informed them of the project progress and outcomes. We have submitted an abstract based on findings from round one of the consultation to an invited symposium in the 27th Asia-Pacific Regional Conference of Alzheimer’s Disease International (ADI). We will lead the symposium presentation on the topic of 'Cross-national collaboration in the cultural adaptation of the World Health Organization’s iSupport for Dementia program'. We will disseminate the findings in the symposium. We are in a progress to develop a manuscript for a peer reviewed journal to report findings from the round one consultation.

Publications and other resources

More information and in-depth updates can be found on the project’s website.

A video has been created documenting community participation in developing iSupport program. The example presented in this report is from the Module 1 of the iSupport for Dementia program. This video will be finalised and reproduced in other 7 languages in the project through community participation in real care settings.

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