Community Engagement Program changing the landscape for people with dementia and carers living in isolated culturally diverse communities

Darwin, despite its relatively small population, is home to one of the most culturally diverse parts of Australia. 

A unique project is underway in the Northern Territory to raise awareness of dementia at a cross-cultural level, by building capacity within the Filipino, Thai, Greek, Indian, German, Italian, African, Vietnamese and Aboriginal and Torres Strait Islander communities to support their members who may be living with dementia or who are caring for someone with dementia.

The Culturally and Linguistically Diverse (CALD) Community Engagement Program develops a system of peer-support to reach into culturally and socially isolated communities to create pathways to overcome stigma attached to dementia and to assist communities to care for and support one another. 

Cald members

In doing so, the Community Engagement Program is changing the landscape for people with dementia and their carers living in isolated CALD and Aboriginal and Torres Strait Islander communities.

The Program, made possible through a National Dementia Support Program Targeted Innovative Grant Project, looks to establish peer-support and train volunteers in the selected CALD communities to better inform them about dementia and the assistance available, which they can then share widely with their community members.

However, the diversity of the Darwin population and relatively small size means that particular CALD groups may be small in number and difficult to access, because many don’t have formal groups.

In a bid to combat this and provide dementia information and education to often small and difficult to reach CALD communities within Darwin, a Project Officer has been working with a number of established CALD community/social groups to raise awareness about dementia, risk reduction and the role of Dementia Australia.

The project officer meets regularly with the CALD Linkcare Exercise Group fortnightly, which has about 30-40 seniors from each of the CALD communities in the project and others; the Filipino Senior’s Association, the Italian Women’s Social Group and meetings held at Multicultural Council NT (MCNT) which allows networking opportunities with people from various CALD communities.

One of the benefits of meeting with mixed CALD groups has been the establishment of connections and relationships between communities which were not originally earmarked as part of the project, but are also isolated including the Burmese and Cambodian communities comprised of small numbers of people who predominately live and work in the rural area and agricultural enterprises. 

Through these networks, a number of formal education and interactive learning sessions have been presented to 200 participants within the Filipino Seniors, Italian Ladies Group, the East Timorese Seniors Group, Vietnamese rural community, the Greek community and a Multicultural Forum. 

The education sessions cover: What is dementia, risk reduction, signs and symptoms of dementia, how dementia is diagnosed, living well with dementia and where to get help, with interpreters used for all sessions to ensure all information is understood in the context of culture and community. 

Younger Onset Dementia Key Worker and Community Engagement Worker Stephanie Charlesworth provided training on the remote respite camp.

“With this group of ladies I needed to start at the beginning as they all said they did not know what dementia was,” Steph said.

“It took many questions until we understood each other. This is where words can be cumbersome and complicated and without relationship, they can mean nothing. The resource ‘Your Story Matters’ was valuable in bringing everything together. They all wanted to watch it twice.” 

Steph said some of the ladies wanted to talk on a more one-on-one basis about dementia and it was good to have the time to do this. 

“After this session they all said that they need to exercise! Another informal session was held using the ‘Looking out for Dementia’ resource this also was a successful tool with more questions being asked,” Steph said.

In other communities it has not been possible to hold formal education sessions, so the Project Officer has engaged with individuals from the Indian, Sri Lankan, Vietnamese, Chinese, African, Burmese, Cambodian and East Timorese communities to discuss paths for improving dementia awareness. 

Both the education sessions and meeting with individuals have led to a number of volunteers offering to be the ambassadors of the program into their communities.

Several volunteers already have knowledge of dementia as a result of their work experience and are willing to support other volunteers to learn about dementia and support services.

The recruitment of volunteers within CALD communities promotes the sustainability of this program and increases information reach to consumers. 

The success of the program has been strengthened further through partnerships with the Multicultural Council NT and representatives of COTA (especially the Partners in Culturally Appropriate Care – PICAC coordinator).  The vast reach of the program has also been achieved through utilising existing groups such as Link Care and through client family community connections.