BackgroundBoth Australia and China have a large proportion of people with dementia and the prevalence will triple in Australia and increase five times in China by 2050. The majority of people with dementia are reliant on family caregivers to provide daily care and to maintain the dignity in both countries. As a consequence, caregiver burden has become a major concern because of the negative impact on the care recipients’ and the caregivers’ health. It is strongly recommended that cross-national collaboration should be conducted to share experiences in fighting dementia. The aim of this study was to compare socially and culturally constructed enablers and barriers pertinent to dementia caregivers in one capital city in Australia and one capital city in China through critical reflection on the caregivers’ subjective and objective experiences for the improvement of dementia care services in both countries.MethodsGiddens’ Structuration Theory was used as a framework to guide a concurrent mixed methods design with the qualitative strand as a priority. In the qualitative strand, data were collected by focus groups and in-depth interviews while in the quantitative strand, data were collected by questionnaire survey.ResultsIn total 148 caregivers participated in the project with 57 of them from Australia (26 and 31 in the qualitative and quantitative strands respectively) and 91 of them from China (23 and 68 in the qualitative and quantitative strands respectively). Findings from the qualitative and quantitative strands were presented as three categories: A higher objective burden in the Chinese cohort versus a higher subjective burden in the Australian cohort; Unmet need for caregiver support in Australia and China; and Expectations for improving dementia services in Australia and for developing dementia services in China.ConclusionsDementia policy, services and resources need to be grounded on current research evidence in an ever-changing society like China. In Australia, dementia services need to have more components of preventing or reducing caregivers’ subjective burden. As subjective burden is mediated by culture, caregiver support mechanisms should consider caregivers’ needs associated with their cultural values.

Most caregiver interventions in a multicultural society are designed to target caregivers from the mainstream culture and exclude those who are unable to speak English. This study addressed the gap by testing the hypothesis that personalized caregiver support provided by a team led by a care coordinator of the person with dementia would improve competence for caregivers from minority groups in managing dementia. A randomised controlled trial was utilised to test the hypothesis. Sixty-one family caregivers from 10 minority groups completed the trial. Outcome variables were measured prior to the intervention, at 6 and 12 months after the commencement of trial. A linear mixed effect model was used to estimate the effectiveness of the intervention. The intervention group showed a significant increase in the caregivers' sense of competence and mental components of quality of life. There were no significant differences in the caregivers' physical components of quality of life.

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.