Australians and people in western society in general have a greater awareness of dementia than in past generations. Yet in terms of understanding the disease and interacting with those who have it, we still seem to fall well short. That’s the finding of a new report from an organisation as well qualified as anyone to know – Dementia Australia.
‘People in the community’ are the challenge and the solution: Towards a dementia-friendly future directly tackles the issue.
The report, released this month, found that despite having a greater awareness of dementia, attitudes towards sufferers are often misguided. This can, in many cases, result in unwarranted discrimination. An accompanying media release states: “The report reflects the ongoing realities of stigma and discrimination experienced by people living with dementia.”
Where are we going wrong with dementia sufferers?
Dementia Australia identified four key areas it feels need addressing. Their research found that:
- Nearly three in four people with a loved one living with the condition felt that people patronised their loved one.
- Three in four 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.
The third of those points identifies a key concern, one that inspired the report’s title: ‘people in the community’.
Implied here is that it’s not necessarily those who are closest to sufferers that are a source of frustration and discrimination. Rather, it is those second or third ‘in line’, such as friends or those in the wider family circle.
Better placed than most to put those frustrations into words is Dementia Australia advisory committee chair Bobby Redman. As well as being a retired psychologist and Dementia Australia dementia advocate, she herself lives with the condition.
In the report’s foreword, Ms Redman outlines that there has been little shift in attitude towards those with the condition when comparing 2019 to 2023 data. In both cases, the attitude betrays a lack of knowledge.
“This lack of knowledge results in stigma, discrimination and social exclusion,” Ms Redman wrote. “As a person living with dementia, this saddens me. 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? Why are they not changing their attitudes? All we are asking for is to be understood, respected and supported – just basic human rights.”
The challenge and the solution
Dementia Australia’s report clearly claims that solving the problem lies with those who are a fundamental part of the problem.
“If ‘people in the community’ are the most commonly identified source of dementia-related stigma and discrimination, ‘people in the community’ are also, incontrovertibly, part of the solution”, the report states.
With an estimated two in three people with the disease living in the community, identifying and then implementing solutions is important. But what form should these solutions take? The report advocates engagement at government, community and individual levels.
“Governments can demonstrate tangible support … by referencing dementia and dementia-friendly communities in inclusion policies, strategies and plans,” the report states. This can be done through the “provision of local funding sources and mechanisms to support the creation of place-based, community-led dementia-friendly initiatives.”
Several such community initiatives are already successfully in place. One example is the Swan Valley Memory Café not far from Perth in Western Australia. Founded with the support of Dementia Australia, the café is a space “where people living with dementia and their family members and carers could find friendship, inclusion and connection and continue to feel part of their community”.
What started as a group of six has grown to a community of more than 50 regular café attendees.
Individual attitudes towards dementia
And what can we as individuals do? Allison Carter, founder of the Gold Coast Dementia-Friendly Network, has some very simple advice. “All you have to do is ask, right? A lot of people out there want to help or want to do something, anything. There are lots of organisations that want help and get involved in all sorts of different ways.”
On top of that, we can perhaps park any preconceived ideas about the capacity of those with dementia. Approaching them as we would any other person might be a good start.
Do you know someone with dementia? Do you think you have a good understanding of what the disease entails? Let us know via the comments section below.
Also read: Dementia cases spike in Australia
Disclaimer: This article contains general information about health issues and is not advice. For health advice, consult your medical practitioner.
