Journal article
Developing a dementia care and support needs framework for Culturally and Linguistically Diverse populations: A whole‐of‐community co‐design approach
Australasian Journal on Ageing, Vol.44(2), pp.1-10
2025
PMCID: PMC12010319
PMID: 40256899
Abstract
Objectives
Older individuals with dementia and their families from CALD backgrounds face a ‘triple jeopardy’ due to the combination of dementia, caregiving challenges and cultural stigma. Despite the growing need for culturally responsive dementia care, existing services do not adequately address the specific concerns of Culturally and Linguistically Diverse (CALD) communities. This study explored the experiences of two CALD communities to inform the development of a culturally tailored dementia care support framework.
Methods
This study employed a whole-of-community co-design approach, integrating community-based participatory research and human-centred design principles. A total of 36 participants, including nine individuals with dementia and 27 family caregivers from the Macedonian and Italian communities in the Illawarra Shoalhaven region of NSW, Australia, collaborated with ADHERe researchers and the Multicultural Health Service. Data were collected through co-designed focus groups and interviews and analysed using thematic analysis. Participant feedback was regularly incorporated to ensure the framework reflected their lived experiences and needs.
Results
Key barriers to dementia care included emotional and psychological strain contributing to caregiver burden, social isolation limiting peer support, language difficulties hindering communication with health-care providers and cultural misunderstanding impacting service uptake. Participants emphasised the importance of face-to-face interactions, culturally relevant educational programs and practical guidance from health-care professionals to improve dementia care and support.
Conclusion
This study highlighted the need for a culturally tailored, community-driven dementia care framework. Piloting a dementia education program with the Macedonian and Italian communities will provide valuable insights for expanding support to other CALD groups, promoting more inclusive and accessible dementia care.
Details
- Title
- Developing a dementia care and support needs framework for Culturally and Linguistically Diverse populations: A whole‐of‐community co‐design approach
- Authors
- Nina Bala (Corresponding Author) - University of the Sunshine Coast, Queensland, School of Health - NursingBiljana Stanoevska - Illawarra Shoalhaven Local Health DistrictJohn Paul Troiani - Illawarra Shoalhaven Local Health DistrictXinxia Wang - University of WollongongNadine Veerhuis - University of the Sunshine Coast, Queensland, School of HealthLeissa Pitts - Illawarra Shoalhaven Local Health DistrictVictoria Traynor - University of the Sunshine Coast, Queensland, School of Health - Nursing
- Publication details
- Australasian Journal on Ageing, Vol.44(2), pp.1-10
- Publisher
- John Wiley & Sons, Inc.
- Date published
- 2025
- DOI
- 10.1111/ajag.70031
- ISSN
- 1741-6612
- PMID
- 40256899; PMC12010319
- Copyright note
- © 2025 The Author(s). Australasian Journal on Ageing published by John Wiley & Sons Australia, Ltd on behalf of AJA Inc. This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
- Data Availability
- The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.
- Grant note
- This study was supported by funding contributions from the University of Wollongong.
- Organisation Unit
- Healthy Ageing Research Cluster; School of Health; School of Health - Nursing
- Language
- English
- Record Identifier
- 991127002902621
- Output Type
- Journal article
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