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Half a million Australians need support to stop discrimination through Dementia Action Week

People living with dementia are calling on others in the community to recognise the discrimination they face because of their diagnosis as part of Dementia Action Week which runs from September 20-26.

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Dementia Action Week seeks to share ways the community can support people living with dementia and their carers to stop discrimination. [Source: Shutterstock]

Almost half a million Australians currently live with dementia, translating to 1 in 12 people over 65 having a dementia disorder and nearly 30,000 people under 65 living with younger onset dementia.

Dementia is the second most common cause of death in Australia and the leading cause of death for women.

In addition, 1.6 million people are involved in caring for a person with dementia and the situations carers find themselves in are also being recognised during Dementia Action Week.

Dementia Australia Chief Executive Officer Maree McCabe says her organisation will be sharing information about the various ways in which support from members of the community can make a meaningful difference to people living with dementia and their carers, to fit with the awareness week’s theme of ‘a little support makes a big difference’.

“Once a person is diagnosed there is a common perception that they have a complete loss of function and independence, when there is a wealth of evidence that shows people living with dementia, with good support, can live active and fulfilling lives for many years,” Ms McCabe says.

"Our research shows that people living with dementia and carers experience discrimination that can lead to social isolation, loneliness and poor mental health. 

“People living with dementia report that social invitations and inclusion start to dwindle.

“Carers report feeling they no longer have the support of family or friends when the reality is often people close to them withdraw not knowing how to help or not wanting to intrude.”

While the discriminatory behaviour is often unintended, Ms MccCabe says, it is usually due to a lack of understanding of dementia.

“We need to change this experience for people impacted by dementia and Dementia Action Week is one way to start inspiring the community to act and to learn more – to understand how their words, behaviour and responses can make a difference to the lives of people living with dementia and carers,” she says.

According to Dementia Australia’s research more than two thirds of people living with dementia believe discrimination is common and almost nine in ten feel people patronise them or treat them as if they are not smart.

“Research demonstrates that this discriminatory behaviour impacts all aspects of a person’s life; from the way they engage socially to the types of services they access and receive and the way their human rights are interpreted,” Ms McCabe says.

"This disempowerment leads to individuals being less likely to identify or fight for their fundamental human rights and sadly, it demonstrates that we have a long way to go to truly tackle discrimination against people impacted by dementia.”

Today, September 21, is also World Alzheimer’s Day and Alzheimer’s Disease International (ADI) has released its own report, which found alarmingly high rates of undiagnosed dementia around the world.

In Australia, the report estimates up to 60 percent of cases of dementia could be undiagnosed, meaning those people do not have access to potential treatments or support to live their best life. 

Worldwide the main barriers to diagnosis, as identified by clinicians themselves, are lack of access to specialised diagnostic tests, lack of knowledge in making a diagnosis and a belief that nothing could be done for the person, therefore making a diagnosis pointless.

The stigma around the disease and the belief that nothing can be done once a person is diagnosed with dementia as noted in the ADI report, feeds into the discrimination which Dementia Australia is focusing on.

Dementia advocates will be sharing their experiences through media channels this week to spread awareness of how support from members of the community can make a big difference to addressing discrimination and Dementia Australia has provided the below tips.

To support someone living with dementia:

  • Listen properly by not being distracted by technology, don’t judge the person, use body language to show you are listening, have engaging and meaningful conversations and give them time to say what they want to say

  • Ask them directly what event or activity they would like to do and whether they would like to help plan it

  • Give them space and time to solve a problem on their own or complete a task and ask if they need your help as well as how they would like you to help

  • Be respectful by looking at them when you’re speaking with them, allow time for them to understand you and to finish their sentences and don’t use a condescending tone

  • Value the contributions they makes - focus on their abilities and strengths and not on what they can’t do

  • Support the person while they are exercising

  • Help the person to shop for healthy foods and plan healthy meals

  • Help the person to attend appointments

To support carers, Dementia Australia recommends:

  • Keep in touch via calls, emails, letters or visits with the carer so they don’t feel as isolated

  • Encourage them to take a break by offering to spend time with the person they care for

  • Offer to help with some of their responsibilities to take some of the pressure off

  • Invite the carer out or do an activity with them - for example make them a cup of tea or go for a walk together

  • Encourage them to find support groups or services to help them, which can be found by calling the National Dementia Helpline on 1800 100 500

  • Help them to look after their own health and not just the health of the person they care for

  • Support them to look after their mental health if they need help by encouraging them to reach out to mental health services and professionals, or call the helpline

For more information and resources visit the Dementia Australia website.

The University of South Australia has also launched a podcast for Dementia Action Week called ‘Re-imagining Ageing’, on insights into research, living well, ageing well and reducing the risk of dementia, which can be found here.

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