‘A little support can make a big difference’ is the theme of this year’s Dementia Action Week, and that support begins with the destigmatising of the disorder and some basic compassion for the estimated 450,000 persons living with dementia across Australia.
Maree McCabe, chief executive officer for Dementia Australia, tells Aged Care News that a new report titled Discrimination and dementia – enough is enough, highlights the demoralising experiences faced by those living with dementia.
“What that report showed was that 87 per cent of people living with dementia said that they felt patronised by people in conversations and that people treat them like they’re not smart,” McCabe says.
She adds that 75 per cent of those who simply have a predisposition to the condition expect to be treated differently is they eventually received a dementia diagnosis.
“So discrimination is real for people living with dementia,” she says.
Whilst 65 per cent of those living with dementia live in the community, as opposed to a residential aged care facility, most begin to feel isolated due to the stigma of their condition and the lack of understanding from their peers.
“Over time, people living with dementia will lose abilities and challenges will arise, but in the earliest stages people can live well and we need to do everything that we can to ensure that they’re supported in doing so.”
Dementia Australia provides a range of online resources detailing the simple ways one can accommodate the needs of a person living with dementia, including making adjustments to home environments, adapting communication styles and utilising technological aids,
McCabe says that more work must be done to ensure the carers of those living with dementia are also adequately supported.
”They spend on average 60 plus hours a week caring for their loved one living with dementia … Now that’s really challenging because it affects not only their financial situation but also their career.”
Connor O’Carrigan, 23, knows first-hand the strain of caring for a loved one with dementia, having spent four years providing full-time care for his mother who was diagnosed with young-onset Alzheimer’s.
The young consulting firm analyst at the time juggled care alongside completing his commerce degree at Australian National University.
He tells Aged Care News that whilst the impact of his life was incredibly difficult, proactive support from friends and family made all the difference.
“I found that the most powerful way that people were able to support was when they didn’t shy away from the conversation,” he says.
O’Carrigan says that people shouldn’t feel uncomfortable or fear upsetting a carer by asking them how their situation is going.
“I think that if they can broach the topic of the conversation, that allows you to feel a little bit more comfortable if you need to ask for help,” he says.
Although there is still a level of stigma attached to the condition, he says his experience as a carer has exposed him to the overwhelming kindness of those working in the aged care industry.
“Something that this has definitely taught me is that people do really good things for other people out of the generosity of their spirit.”
“There’s some amazing, incredible people working in the aged care setting.”
McCabe says that with 70 per cent of aged care residents living with dementia, the next step to ensuring optimal quality of care is bringing in mandatory education for all aged care workers.
“There’s so much that people can do to really support people well, if they know about the disease and if they know about the individual.
“Especially so they can prevent some of the challenges occurring, rather than dealing with them once they’ve already arisen,” she says.
Visit https://discrimination.dementia.org.au/ for more resources on how you can best support those in your community or in your care living with dementia.