Dementia Australia launched its Action Week on Monday and wants the nation to focus on the discrimination of people with dementia.
‘Dementia doesn’t discriminate, do you?’ is the official theme this year, CEO Maree McCabe told a crowd at the Sydney Opera House launch.
A panel of high-profile dementia advocates gathered to talk about what constitutes discrimination and how it can be tackled. One panellist, ABC chair Ita Buttrose, believes that as a nation we need a massive wake-up call and need to be better educated when it comes to dementia, as seven in 10 families will be affected by the disease at some point.
“Our messages have to be blunter,” she told SKY news political editor David Speers, who facilitated the panel. Shocking the nation out of its apathy was the aim, she said, and she recalled the Grim Reaper TV advertisements of the 1980s as an example of a successful health education campaign.
The panel also included Maggie Beer, interior designer Shaynna Blaze and dementia advocate Phil Hazell.
Hazell – who himself has dementia and appeared with his service dog Sarah – said that he comes across discrimination “on a daily basis”. Discrimination can come from unlikely places, he cautioned, and recalled the day he was diagnosed. Rather than counsel him on his next steps and coping mechanisms, his doctor told Hazell to get his “affairs in order” and “just dropped him”.
After moving suburbs, he struggled to be taken on by another GP once they found out his diagnosis, the “time-reward” wasn’t good Hazell told the crowd. He also struggles to get taxis, as drivers won’t pick him up with his dog, even though the law requires them to do so.
Instances of discrimination can be energy-sapping, Hazell said, and can also exacerbate memory loss and make him scared to leave the house for fear of being embarrassed.
“Structural discrimination” was a theme throughout the discussion, such as the way public spaces are designed, or the struggle those with dementia face when attempting to get travel insurance. Blaze highlighted this when she described her struggle to implement dementia-friendly design and her battles to change “how things have always been done”.
Beer said the food in aged care is subject to similar struggles. There are notable differences in the food served to those with dementia in residential care compared to other residents, and the lack of a specific accredited aged care cooking course also hampers any attempts at change.
A number of videos featured dementia advocates speaking of the way the general public interact with them. “Patronising”, “ignored”, “scared” and “wary” were some of the words used.
Beer and Buttrose see dementia discrimination as a symptom of ageism, and the panel agreed that we need to bring the community together in fighting the problem.
“If you had dementia, how would you like to be treated?” Buttrose asked. Simply, that is how she believes you should approach those with dementia.
Discrimination is “total and utter ignorance”, she said.
Hazell, who was diagnosed five years ago at age 50, has retired but has found purpose in getting up each day and advocating for those with dementia. Without discrimination, “I wouldn’t have many issues”, he said.
“A person living with dementia might be ignored or dismissed in conversations,” McCabe said.
“Sometimes people – without realising it – will talk directly to the carer as if the person living with dementia is not even there.
“Our focus during Dementia Action Week is to deepen the inquiry into discrimination and dementia.”
All Australians can make a difference. Find out more about Dementia Action Week at www.dementia.org.au/dementia-action-week.Do you have an idea for a story?
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