BackgroundPeople with dementia and their family carers need to be able to access formal services in the community to help maintain their wellbeing and independence. While knowing about and navigating one’s way through service systems is difficult for most people, it is particularly difficult for people from culturally and linguistically diverse (CALD) communities. This study addresses a lack of literature on the use of formal services for dementia by people from CALD backgrounds by examining the experiences and perceptions of dementia caregiving within four CALD communities – Italian, Chinese, Spanish and Arabic-speaking – in south western Sydney, Australia.MethodsThe study used a qualitative design and the methods included focus groups with family carers and one-to-one interviews with bilingual/bicultural community workers, bilingual general practitioners and geriatricians. A total of 121 family carers participated in 15 focus groups and interviews were held with 60 health professionals. All fieldwork was audiotaped, transcribed and subjected to thematic analysis.ResultsPeople from CALD communities are often unfamiliar with the concept of formal services and there may be strong cultural norms about maintaining care within the family, rather than relying on external services. CALD communities often have limited knowledge of services. There is a preference for services that will allow families to keep their relative at home, for safety as well as cultural reasons, and they are particularly reluctant to use residential care. While there is a preference for ethno-specific or multicultural services, mainstream services also need to ensure they are more flexible in providing culturally appropriate care. Positive outcomes occur when ethno-specific services work in partnership with mainstream programs. Dementia service providers need to develop a trusting relationship with their local CALD communities and promote their services in a way that is understandable and culturally acceptable to members of these communities.ConclusionsWhile members of CALD communities may have difficulties accessing formal services, they will use them if they are culturally and linguistically appropriate and can meet their needs. There are a number of ways to improve service provision to CALD communities and the responsibility for this needs to be shared by a range of stakeholders.
Dementia incidence rates are rapidly increasing among culturally and linguistically diverse (CALD) Australians, and there is very little local research to inform practice. In response, a qualitative study employing focus group methods was undertaken with carers from 4 CALD communities-Arabic-speaking, Chinese-speaking, Italian-speaking and, Spanish-speaking. The study examined the experiences and perceptions of these family carers with regard to their caregiving for a person living with dementia (PLWD). Analysis revealed that while considerable similarities exist across the experiences and perceptions of carers from all 4 CALD communities, there were nevertheless some important distinctions across the different groups. These study findings have significant implications for those working with CALD communities.
Providing information about dementia has been shown to produce immense benefits for people living with dementia and their carers. The dementia information needs of culturally and linguistically diverse (CALD) families have not been comprehensively investigated. Addressing this research gap, the current study examines the perspectives of a range of stakeholders - CALD family caregivers (Arabic, Chinese, Italian and Spanish speaking), bilingual and bicultural workers, bilingual general practitioners and geriatricians - about dementia-related information. The study focussed on sources of information, issues of access and considerations for improving information provision. The main findings that are relevant for improving policy and practice are: the need for a more strategic and coordinated approach to dissemination structures and processes, a greater emphasis on supporting and enhancing the interpersonal aspects of information provision, the need for a greater range of information for CALD communities and the need to ensure information resources and processes reflect the circumstances and needs of these communities.
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