Fear and misconceptions about dementia are persisting despite an increase in community awareness campaigns, according to a study that calls for new strategies to address gaps in knowledge.
Researchers from Flinders University looked at the results of 32 dementia surveys involving 36,519 respondents from around the world published between 2012 and 2017.
Almost half of still believed that dementia was a normal, non-preventable part of ageing, putting up barriers to both preventative behaviour and contributing to reticence to seek help after a diagnosis.
“Stigmatisation occurs in the absence of accurate understanding, and contributes to social isolation and emotional distress for people with dementia and their carers,” the researchers conclude.
“While the proliferation of public awareness campaigns and dementia-friendly community initiatives in high-income countries appears to be having a positive impact, gaps in knowledge remain and present key target areas for future campaigns.
The study found there were misguided beliefs that strategies like taking vitamins were more effective than exercise for preventing dementia, and a poor understanding of cardiovascular risk factors.
It also found there was a misconception that available treatments are only useful for maintaining wellbeing of people with dementia rather than being able to slow the progression of the disease.
“We’ve had so many decade now of attempts to improve public awareness about dementia and most of these studies showed that people s thought there was no point in treatment which we know is not true,” lead researcher Dr Monica Cations, who is also involved in data collection for studies into pharmaceutical treatments for Alzheimer’s disease, told Community Care Review.
“We know there are ways to slow down the progression of dementia, we know there are ways to improve quality of life. Still there’s this overly pessimistic view of dementia despite many many years of campaigns to try and improve that.”
The study said that since mid-2014 there had been major milestones in dementia research and policy coupled with the proliferation of “dementia-friendly” community initiatives and a proliferation of public awareness campaigns.
“Fear appeal” campaigns
However, many of these were “fear appeal” campaigns that focused on the “catastrophic consequences” of dementia or delivered overly-simplistic or confusing messaging.
“These campaigns are certainly very important in promoting the importance of funding for dementia research … but the unfortunate downside is that we get message that the problem is so big and terrible and it makes people very afraid of dementia.
Dr Cations says the home and community care sector is well placed to spread the message that living healthily, being active, managing heart health and keeping socially active are all good ways of slowing the progression of dementia
The study, published in PlosOne in April, did find however that although knowledge about the potential for dementia treatment and prevention is poor there has been some improvement over time.
“Home care providers have really good access to people living in the community so they’re a really great resource and have a really powerful role in spreading that message,” she said.
Dr Cations said one effective campaign was the UK-based Dementia Friends initiative, which Dementia Australia was beginning to implement locally.
Dementia Australia also recently announced it had joined a global campaign to raise awareness about dementia. You can read the story here.