Living in the real world with dementia – a practical guide

Here’s something that will reassure a great many Australians: if you know someone who is living with one of the various forms of dementia, you are definitely not alone.

While it might come as a surprise to many people, dementia is the second most common cause of death in Australia.  It contributes to 5.8 per cent of all male deaths and is the second leading cause of death in men after coronary heart disease.  For women, dementia is now the leading cause of death, accounting for 11.3% of all female deaths each year.

What will NOT be a surprise, is that dementia mainly affects older people. According to the Australian Bureau of Statistics (ABS), dementia is “very rare in those under 65 years of age (0.1%), increasing to over one quarter (27.5%) of those aged 95 years and over.”

Unfortunately, despite decades of research and ever-increasing numbers of people impacted by it, there is no cure for dementia. Until we have a cure, we need to learn to live with it and the impact it has on our communities.  That’s why researchers, governments and other agencies in the last decade or so have begun to focus on better understanding and managing the way we respond – collectively and as individuals – to the impacts of dementia.

If we can’t cure it, we have to live with it

The World Health Organisation (WHO) has long been focused on raising awareness of dementia and taking practical steps to improve the lives of those affected by it.  That’s the broad backstory to the recent launch of a new WHO toolkit, packed with advice to help governments and local communities do just that.

The document, Towards a dementia-inclusive society: WHO toolkit for dementia-friendly initiatives, was launched in early August 2021 as a kind of how-to guide to raising public awareness and understanding of dementia.  Its outcome goal is that people living with dementia are supported and empowered to remain living, and playing as active a part as they can, in their communities. 

The main audience for the toolkit is people working in government and community service organisations who need to plan and implement ‘dementia-friendly’ programs  – or to incorporate dementia into other community planning initiatives, such those relating to age-friendly environments and the UN Decade of Healthy Ageing.  But according to one of the project coordinators for the toolkit, we can all learn from the philosophy and advice. 

Australian healthcare consultant and dementia specialist, Dr Maggie Haertsch, says the toolkit will help governments and communities to ‘mainstream’ dementia as another aspect of health and disability diversity that needs to be understood and incorporated into the fabric of our communities and the way we design our systems and services.

If we don’t understand and accommodate a syndrome like dementia, that affects such a large number of people, Maggie says, we risk creating problems for services and businesses and potentially causing harm to many individuals.

“In the same way that our society has become more automatically inclusive of physical disability – by providing accessible streets and buildings, braille pedestrian crossings, hearing loops in theatres, sign language with government announcements, closed captions for television – we need to be inclusive of cognitive impairment, like dementia,” she says.

“People living with dementia can behave in a range of ways that can be severely misinterpreted, including by police and shop owners, hairdressers, bank staff, anyone who provides services and comes into direct contact with people.

“We need to understand that someone living with dementia might behave in a particular way because of confusion or fear or an unmet need and sometimes this can look like domestic violence or ignorance or reckless disregard for others.”

Education can make a huge difference

Maggie says there are a lot of good case studies in the WHO toolkit that demonstrate how a better understanding of dementia in the community leads to better outcomes, not just for people with dementia, but for the individuals, organisations and groups who do the training and learn the skills.   

“The story about the police force in Austria is a great example.  It can be really confronting and difficult for police when they come across people who are living with dementia who might be wandering or lost and they find it difficult to communicate.  And at the same time, it can be harrowing for the person with dementia being confronted by police – they might feel threatened and panic and they might behave aggressively.

“So without that education and understanding on the part of the police, people living with dementia might be restrained and locked up; and that happens.  But with training, police can identify a situation where the person may have dementia and can use a different approach.  In Austria they now have accredited ‘dementia friendly’ police stations where police are trained and they have relationships with local social services and experts. It makes a big difference for people living with dementia in these communities and their families to know there is that training and understanding,” said Maggie. 

Maggie says a foundational message we can all take from the WHO toolkit is that we can all learn to think differently about customer service.  

“If you work in any capacity where you connect with older people, you need to know at least the basics about dementia, how it impacts people and how you can learn to recognise and respond – whether you are a carer of someone living with dementia or someone who works in a supermarket or the post office, or if you are the hairdresser or the optometrist. 

“We need to understand that dementia is a health issue, like other illnesses and disabilities.  It is a syndrome of neurodegenerative decline.  It isn’t a ‘normal’ part of ageing, but it is affecting an increasing percentage of the population as we all live longer lives, so we have to recognise and understand it better, not fear it.

“We all stand to gain from living in a society that’s more tolerant, easier to navigate, and designed to cater to a wide range of needs.” she said.

Free education about dementia

The Commonwealth government has made it easier to understand dementia and how to manage and respond to it through funding organisations like Dementia Australia, Dementia Services Australia and Dementia Training Australia.

Dementia Training Australia provides free interactive online training modules on a range of dementia-related topics for individuals, as well as training for organisations.

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