Dementia is largely an invisible disability that is unique in its impact on individuals. The stereotypical person living with dementia simply doesn't exist. What does exist, sadly, is a trend toward delayed diagnosis and social isolation due to discrimination. So, how can we do better?
We need to educate ourselves and support those living with dementia in the wider community, says Dementia Australia CEO Maree McCabe AM.
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"Discrimination and a lack of understanding around dementia create a barrier to talking about it. [So], people's concerns aren't taken seriously, which delays diagnosis and prevents them from seeking help."
The impacts of discrimination on those living with dementia are significant and wide-ranging, explains Ms McCabe.
"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."
As a result, there are serious consequences for the physical, cognitive and psychosocial health of the person living with dementia.
"Often discriminatory behaviour is unintended and comes from a lack of understanding about dementia and its impact on people.
"A better understanding of dementia can help make a positive difference to the lives of people impacted by this condition – and help eliminate discrimination."
Health professionals must lead the way
Health professionals play a crucial role in encouraging prompt support-seeking and education to counteract the impact of discrimination.
"GPs and other health professionals can help tackle discrimination by improving their understanding of the benefits of early diagnosis, to help overcome any barriers to and delays around accessing support.
"Supportive health and allied health professionals play an important role in eliminating discrimination and helping people living with dementia to live well for longer.
"They can access dementia-specific education to increase their understanding of how to empower patients impacted by dementia to be informed about appropriate services, information and supports available," says Ms McCabe.
Healthcare professionals can also encourage patients to download
BrainTrack, a free app that monitors changes in cognition over time. The data generated can be easily shared with a health professional to guide appropriate services.
We count on our community
More than half (65 per cent) of people living with dementia live in the community. So, creating awareness and increasing support for those impacted is vital. But there's still a way to go, according to Dementia Australia.
A recent Dementia Australia survey found that 65 per cent of respondents who live with dementia believe discrimination towards people with dementia is common or very common.
"We know discrimination has a big impact on people living with dementia, their families and carers, and a little support from the community can make a big difference.
"We are encouraging communities to come together and learn more about how they can support people living with dementia.
"Often discriminatory behaviour is unintended and comes from a lack of understanding about dementia and its impact on people.
"A better understanding of dementia can help make a positive difference to the lives of people impacted by this condition – and help eliminate discrimination," says Ms McCabe.
Creating dementia-supportive communities
Dementia Australia has several tips for communities on how to support and embrace those living with dementia:
Raise your awareness – educate yourself on dementia
Include, encourage, empower – create opportunities for those living with dementia
Listen with your heart – body language can show you are engaged and present
Create moments of joy – look for ways to laugh together
Dementia-friendly environments – learn how to contribute to wellbeing
Look out for people in your community – find ways to connect
Share the knowledge – increase awareness among friends and relatives
Learn more about creating a supportive community for those living with dementia at
Dementia Australia.
Quality dementia care in aged care crucial
We've seen significant investment in aged care in recent years, and many reforms are underway to fulfil the recommendations of the Royal Commission into Aged Care Quality and Safety.
Considering more than two-thirds (68.1%) of aged care residents have moderate to severe cognitive impairment, delivering quality dementia care needs to be a core business – but it's not there yet, says Ms McCabe.
"Quality dementia care must be top of the agenda for every plan, framework, strategy and review of the aged care system reform process, including residential, home and community care.
"All staff employed and entrusted to provide care must be appropriately trained in dementia care.
"The sooner the aged care workforce is accessing appropriate dementia care education and training, the sooner we will begin to see the changes needed to improve health, lifestyle and care outcomes for people of all ages living with all forms of dementia, their families and carers."
Noah Davis, who supports an aunt living with dementia, says there are several ways to better support people living with dementia and their caregivers and families.
"We can educate ourselves about what it means to live with dementia and how we can best help those impacted by it.
"This includes learning about different types of dementia and how they affect the brain, as well as understanding how our own behaviour and actions might impact those living with this condition."
It sounds simple, but just offering to help a person living with dementia or their carers makes a huge difference.
"Many people are afraid to ask for help because they don't want to be a burden on others or feel like they're inconveniencing them.
"If you know someone caring for someone with dementia, ask them if there's anything you can do to help—it may be as simple as making a meal or doing some laundry," says Davis.
Those with a diagnosis of dementia, or mild cognitive impairment, or who are concerned about changes to their own or a loved one's cognition, can contact the National Dementia Helpline on 1800 100 500, 24 hours a day, seven days a week, 365 days a year, says Ms McCabe.
"No one should have to face dementia alone. That's why Dementia Australia is here, and we're always here to help."