Research finds community engagement is both a challenge and a solution

Dementia Australia’s newest research report highlights how the pervasive dementia-related stigma continues to impact society due to limited knowledge and understanding about dementia.

This is despite the repeated efforts of major organisations working to increase awareness and overcome the significant and wide-ranging impacts of stigma.

Key points

• ‘People in the community’ are the challenge and the solution: Towards a dementia-friendly future looks at data and research from the 2023 Australian Institute of Health and Welfare (AIHW) Dementia Awareness Survey and preceding reports from other organisations
• Overall, the findings show that Australians know little about dementia with fear and uncertainty as common themes found within public perception
• The vast majority of people living with dementia plus their friends, family or carers believe discrimination is common with community-imposed and internalised stigma among the many factors impacting social engagement and inclusion
• The paper says that community initiatives underpinned by the belief that people with dementia can enjoy life are simple but effective solutions to creating dementia-friendly environments that break down social stigma and barriers

Australia’s struggling to make progress

Among the key findings of the research is the fact that little progress has been made regarding public perceptions of dementia.

For example, one in three people still think dementia is a normal part of ageing, a statistic that has actually increased in the past decade. This is one of the strongest misconceptions society holds.

Meanwhile, A whopping 68% of people in 2024 also say they know very little about dementia; this is the exact same figure as data from 2012 revealed. 

“These findings are consistent with results from Dementia Australia surveys over the last decade, showing an ongoing – and profoundly concerning – lack of awareness and understanding about dementia in the Australian community,” the report stated. 

Dementia Australia Advisory Committee Chair Bobby Redman, who lives with dementia, said it is almost unbelievable that we are still having to talk about the limited awareness and understanding about dementia. 

“Why do people treat us differently? What have we done to deserve this? As a Dementia Advocate, it angers me. Why are people not listening? All we are asking for is to be understood, respected and supported – just basic human rights,” Ms Redman said.

“If local councils, businesses and organisations recognise that dementia is no less of a disability because it is invisible, we could feel supported. If friends and others in our community keep an eye out for us and make sure we are included, we can feel less socially isolated.”

Other data from the 2024 report shows that: 

• Nearly three in four people (71 per cent) with a loved one living with dementia felt that people patronised their loved one  
• Three in four (76 per cent) felt people treated their family member or friend with dementia as though they were not smart 
• Two in three identified ‘people in the community’ as the most common source of discrimination.  
• One in three suggested that people avoid or exclude their loved one with dementia 

Recent research even suggests that the social isolation and loneliness caused by reduced social engagement can result in harmful impacts with a mortality risk similar to that of smoking cigarettes. 

“Australian and international studies show that stigma and discrimination associated with a dementia diagnosis can discourage people from seeking health care, including a diagnosis, and reduce social engagement with family, friends and the broader community, which has knock-on impacts on the physical, cognitive and psychosocial health of the person with dementia,” Dementia Australia CEO Professor Tanya Buchanan said. 

“It is incredibly disappointing that Australians’ understanding of dementia has not shifted in a decade and profoundly concerning that more people now think dementia is a normal part of ageing than they did a decade ago. Dementia is not a normal part of ageing.”

Creating dementia-friendly communities

International analysis recognises that dementia-friendly communities are context-dependent, meaning that local communities have to be involved in their development and support. Otherwise, there is no true way for people living with dementia to benefit. 

“There is some great work happening in some communities to combat this discrimination and stigma which is heartwarming and encouraging – but we need to do more,” Ms Redman added.

“Communities and Governments – local, State and Territory and Federal – need to raise awareness and understanding of dementia and to take action to make communities more inclusive for people living with dementia.” 

Dementia Australia’s report showcases two community-based initiatives, including the Gold Coast Dementia-Friendly Network which is partnered with the local council, businesses, a library, a choir and even a police station.

All of these organisations and businesses provide something of value, whether it’s a free venue for monthly talks, or trained parrots as companions that can support people living with dementia. 

Perth’s Swan Valley Memory Café grew from humble beginnings with over 50 people regularly attending a range of events and classes. Jan O’Shea, who founded the Café to provide somewhere for people living with dementia and their family members and carers to meet, said it has forged lifelong bonds.

“People living with dementia and their relatives and carers get great value out of coming to the memory café. We’ve got three gentlemen who used to bring their wives to the café; their wives went into care and subsequently died. These three gentlemen still come to the café because they made so many friends who are part of their lives now,” she shared. 

Professor Buchanan said these are great examples of dementia-friendly communities and called for more action by those with power and resources. 

“This Dementia Action Week Dementia Australia is calling for urgent and sustained action by communities and governments at all levels to increase their awareness and understanding of dementia – and to become the solution.”