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New carers website aims to change ‘culture of dementia despair’


A new website is being launched where carers of people with dementia can find information and share their stories.

The Dementia Carers Australia website, an initiative of the University of Western Sydney School of Social Sciences and Sydney University Department of Anthropology, was developed by academics Dr Gaynor Macdonald and Associate Professor Jane Mears, authors of Dementia as Social Experience: Valuing Life and Care.

Dr Gaynor Macdonald

Dr Macdonald, who cared for her partner for five years during his dementia journey, says it’s difficult for informal carers, families and friends of people with dementia to access the kind of information they need.

She says while it’s easier to find certain types of information, such as task-orientated guidance, getting hold of information about the complexities of the changing relationship between a person with dementia and their carer is harder to come by.

“We were working with carers to design the website so that carers are actually fill in the gaps,” she told Community Care Review.

“Professional and home carers often don’t come on board until later, so when you get a diagnosis you go home and think what’s next? And there’s no easy way to find information.”

The website will contain links to other websites, organisations, books and resources, but will focus primarily on carers’ stories.

“The major rationale is that carers are the best people to help other carers,” Dr Macdonald says. “They’re the ones with experience, they’re the ones with insight.

“A lot of professionals, however well trained and however well meaning, simply don’t get what being a carer for someone with dementia is. It’s not the same as doing an eight-hour shift in a residential home.”

Countering stigma and distress

The website also aims to counter the stigma and distress often associated with dementia.

“We want to create a much more positive creative enabling environment,” Dr Macdonald says. “Changing the culture of dementia despair is incredibly important. We want to counter the idea that somebody has suddenly become lost.”

Dr Macdonald says a specific dementia carers website is needed because dementia care is unique.

“Dementia care is absolutely different to any other kind of care”, she says.

Dr Macdonald says caring for somebody who is on a journey of change requires enormous adaptation on the part of a carer, far beyond just settling into a new routines.

“The emotional and social demands of that are very little known,” she says, adding that hearing the stories of other carers who have experienced later stages of the disease can help others prepare for what lies ahead.

The website will be launched at the Reframing Relatedness workshop at Sydney University on July 26, which will explore ideas for communicating well in dementia relationships.

People with dementia, their carers and families are invited to attend the workshop  to share insights about communication through the stages of dementia.

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3 Responses to New carers website aims to change ‘culture of dementia despair’

  1. Tamara May 16, 2019 at 11:18 am #

    What’s the URL for the website please?

  2. Ted Wards May 16, 2019 at 3:35 pm #

    Disagree, Im sure sites like carers link and carers gateway who have been around for a long time would find this article highly insulting. This is happening more and more often where unis dont know whats out there so they think nothing is there. I did a carers course with Carers SA in the late 1980s that my husband and i instigated because he was at the time, the youngest person ever to be diagnosed with a dementia, in his late 30’s. There was literally nothing around except Carers SA. The issue with our whole system is you don’t know what you need until you need it, then you panic and tell everyone there is nothing around. Not true, there is not a new service around that you haven’t been able to access since 1985. Another colossal waste of money.

  3. Will Sullivan May 17, 2019 at 7:13 am #

    Whenever there is a big pot of money the hangers-on and fringe-dwellers come along to get a slice of the action. We saw it in the indigenous industry, in mental health and disabilities sectors. Academics and advocates, website developers, innovation consultants, community engagement gurus and other parasites. What a waste. What we need is less research and experimentation, and more direct funding of the consumer and their carer. Long live CDC!

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