TY - JOUR
T1 - Development of Moving Pictures GENIE-an online gateway to dementia resources to support Culturally and Linguistically Diverse (CALD) communities
AU - Antoniades, Josefine
AU - Brijnath, Bianca
AU - Radford, Kylie
AU - Lavrencic, Louise
AU - Dasgupta, Jayashree
AU - Parra-Rodriguez, Mario A
AU - Franzen, Sanne
AU - Lock, Kayla
AU - Lay, Veronica
AU - Medel, Carolina Navarro
PY - 2023/12/25
Y1 - 2023/12/25
N2 - Abstract Background Over the past decades the use of technology in healthcare has increased exponentially, and the recent pandemic further accelerated the dependence on technology, both to access health and care services but also digital resources and information for health care consumers. Carers of people living with dementia from culturally and linguistically diverse (CALD) backgrounds have been disproportionately impacted as in-language resources are scarce and locating them can be difficult. Thus, there is need to centralize digital resources to improve access for carers of persons living with dementia who speak languages other than English. Responding to this, our project co-produced the GENIE (Global dEmeNtIa rEsources): a comprehensive, global online gateway to culturally and linguistically appropriate digital dementia resources. Method Methods comprised an environmental scan (academic literature and systematic online search) and online consultations with key stakeholders to identify resources. Resources were included if developed by healthcare organizations, dementia or aged care peak bodies, dementia advocacy groups, government departments, or academic organizations. The GENIE site was coproduced with CALD carers and providers in Australia. Data analytics are being collected via the website. Result The environmental scan highlighted the dearth of resources developed for CALD communities, and gaps in availability of digital dementia resources across many languages. Further, dementia resources identified via the literature search were often not available for public access, required payment, or were no longer available. More than 400 resources in 68 languages were identified and included in the gateway, and the site was made publicly available in November 2022. Data analytics show that the uptake of the resource has been good with > 700 new users and >3500 page views in the first two months. Conclusion The Moving Pictures Genie project has produced one of the most comprehensive gateways to digital dementia resources to support carers and families who speak languages other than English currently available. In addition to the production of the resource, the project provides insights into the gaps in existing resources across languages and geographical regions. These findings will be useful to guide the direction of resource development to avoid duplication and enhance equity and benefit to CALD communities.
AB - Abstract Background Over the past decades the use of technology in healthcare has increased exponentially, and the recent pandemic further accelerated the dependence on technology, both to access health and care services but also digital resources and information for health care consumers. Carers of people living with dementia from culturally and linguistically diverse (CALD) backgrounds have been disproportionately impacted as in-language resources are scarce and locating them can be difficult. Thus, there is need to centralize digital resources to improve access for carers of persons living with dementia who speak languages other than English. Responding to this, our project co-produced the GENIE (Global dEmeNtIa rEsources): a comprehensive, global online gateway to culturally and linguistically appropriate digital dementia resources. Method Methods comprised an environmental scan (academic literature and systematic online search) and online consultations with key stakeholders to identify resources. Resources were included if developed by healthcare organizations, dementia or aged care peak bodies, dementia advocacy groups, government departments, or academic organizations. The GENIE site was coproduced with CALD carers and providers in Australia. Data analytics are being collected via the website. Result The environmental scan highlighted the dearth of resources developed for CALD communities, and gaps in availability of digital dementia resources across many languages. Further, dementia resources identified via the literature search were often not available for public access, required payment, or were no longer available. More than 400 resources in 68 languages were identified and included in the gateway, and the site was made publicly available in November 2022. Data analytics show that the uptake of the resource has been good with > 700 new users and >3500 page views in the first two months. Conclusion The Moving Pictures Genie project has produced one of the most comprehensive gateways to digital dementia resources to support carers and families who speak languages other than English currently available. In addition to the production of the resource, the project provides insights into the gaps in existing resources across languages and geographical regions. These findings will be useful to guide the direction of resource development to avoid duplication and enhance equity and benefit to CALD communities.
KW - technology in healthcare
KW - digital dementia resources
KW - resource development
U2 - 10.1002/alz.078030
DO - 10.1002/alz.078030
M3 - Conference abstract
SN - 1552-5260
VL - 19
JO - Alzheimer's & Dementia: The Journal of the Alzheimer's Association
JF - Alzheimer's & Dementia: The Journal of the Alzheimer's Association
IS - S19
M1 - e078030
T2 - Alzheimer’s Association International Conference 2023 (AAIC®)
Y2 - 16 July 2023 through 20 July 2023
ER -