Changing the dementia landscape

A team of researchers led by Dr Diana Karamacoska are creating a dementia-friendly community in the heart of South West Sydney.

By Kaitlin Bonner

The incidence of dementia is on the rise with South West Sydney expected to have the highest rate of increase in NSW by 2050.

The significance of this projection and its impact on the community is not lost on researchers at NICM Health Research Institute, Western Sydney University, who strive to better support the estimated 8,000 people living with dementia in the Canterbury-Bankstown region.

Dr Diana Karamacoska and her team, including Masters student, Eman Shatnawi, aim to establish Canterbury-Bankstown as a dementia-friendly community – a concept that refers to the engagement, enablement and empowerment of people affected by dementia.

“I had two grandparents diagnosed with dementia when I started my PhD in cognitive neuroscience,” says Dr Karamacoska.

“I found myself thinking about how the brains of my grandparents were affected by dementia and what little support and information we were given when seeking help for them.”

Through the team’s work, funded by the Age and Ageing (AAA) Clinical Academic Group and the Healthy Urban Environments (HUE) Collaboratory of SPHERE, an evidence-practice gap was identified among the diverse communities of South West Sydney where 54% of households speak a language other than English. These individuals, when diagnosed with dementia, face greater social exclusion and poorer health outcomes than the English-speaking population, with the disparities being driven by language barriers, culturally inappropriate and inaccessible dementia education and support services, as well as stigma.

Dr Karamacoska experienced this first-hand with her grandmother.

“My baba (grandmother) has lived in Australia for nearly 40 years but doesn’t speak English so accessing care for her dementia is a challenge. I wanted to make a difference in our communities, to change perceptions about this condition and how we treat it, so that our loved ones receive the care they want and need.”

The funded project, ‘How can people with dementia and their caregivers be supported by the built environment?’ has recently been completed capturing the insights of English, Arabic, Vietnamese, Chinese and Greek speaking people living with dementia and their caregivers through oneon-one interviews and delivery of information sessions about dementia to these communities. The impact was widespread and well-received, with the team presenting 18 sessions to the community to raise awareness of dementia, reaching more than 1,000 people.

Due to their work and commitment, this project has seen real changes to policy and infrastructure plans.

“We’ve successfully advocated for the recognition of dementia in Canterbury-Bankstown Council’s policies regarding their Disability Inclusion Action Plan and Positive Ageing Plan. The Council has committed to delivering more education about dementia to their staff and communities. We’re also working with Bankstown’s theatre, hospital, and shopping centre to address infrastructure changes regarding paths, rest areas, signage, noise levels, and lighting to improve the accessibility of these spaces for people with dementia.”

The project also helped launch the Canterbury-Bankstown Dementia Alliance in 2021 which is co-convened by Dr Karamacoska and Sandra Loyola Sandoval from Canterbury-Bankstown Council. This working group comprises representatives from Western Sydney University, Canterbury-Bankstown Council, South Western Sydney Local Health District, Dementia Australia, CASS Care, Australian Nursing Home Foundation, and Bankstown Dementia Carers Group.

“According to Dementia Australia, we are the first dementia alliance to represent and work with culturally diverse people in Australia,” says Dr Karamacoska.

The alliance informs, guides and translates the research being undertaken in this area. Together, they have successfully co-created and delivered several dementia education sessions in different languages. These information sessions were incorporated into their annual action plan to ensure destigmatising efforts are sustained.

So, what’s next? The group was successful in receiving further funding through the AAA CAG and are now embarking on a two-year project looking at dementia literacy, diversity issues, and inclusion practices among multicultural communities and care workforces in South Western Sydney.

“Culturally and linguistically diverse (CALD) people are especially disadvantaged by the lack of accessible, sensitive, and appropriate education opportunities that are available to them. We are thus co-creating a dementia education program with dementia advocates from English, Arabic, Vietnamese, Chinese and Greek speaking backgrounds to translate the knowledge and evidence-base to the families and workers who support people with dementia. We hope to deliver the program in late 2023.”

Dr Karamacoska is proud of her team’s achievements, and grateful for SPHERE’s support over the last few years. Through the SPHERE network, she has been able to have her events promoted, projects showcased, and has been able to connect with the newly established AAA CAG Consumer Council.

“It was great to get their perspective on the project’s design, consumer engagement efforts, and dissemination plan.”

Dr Karamacoska believes the sky is the limit with what she and her team can achieve and hopes that the work they have done so far can be utilised by other communities in the future.

“I’m most proud of the model for multisectoral collaboration and inclusive research that we developed here. We’ve done the groundwork to understand our various stakeholders’ needs so now we can take the next step with our research to develop appropriate interventions. The best part is, this model can be adapted to other settings, in and outside the dementia space.”

To find out more about the Canterbury-Bankstown Dementia Alliance, head to the website: www. cbcity.nsw.gov.au/community/ community-services/seniors/ dementia-alliance or contact Dr Diana Karamacoska via email d.karamacoska@westernsydney.edu.au.