TORONTO, Canada – Results from the world’s largest global survey on attitudes to dementia reveals stigma around the condition is worsening among the general public and even healthcare professionals.
The World Alzheimer Report 2024 published by Alzheimer’s Disease International (ADI) and underpinned by a survey analysed by the London School of Economics and Political Science (LSE), found a shocking 80 percent of the public still incorrectly believe dementia is a normal part of ageing rather than a medical condition, a 14 percent increase since the survey was last conducted in 2019.
Furthermore, 65 percent of healthcare professionals still view dementia as a normal part of ageing rather than a medical condition, a three per cent increase since 2019’s survey.
“This inaccurate view of dementia is a major concern, particularly from healthcare professionals, as it can delay diagnosis and access to the right treatment, care, and support,” says ADI CEO Paola Barbarino, adding that this comes at a time when new treatments are being approved around the world, alongside breakthroughs in diagnostics.
“We need our healthcare professionals to more readily understand that dementia is a medical condition caused by a set of diseases, Alzheimer’s being the most prevalent, so that a correct diagnosis can be given, opening the door for a combination of treatments, care, and support that can enable people to live well for longer, to remain at work, at home, and in the community.”
88 percent of people living with dementia indicated they’d experienced stigma, a 5 percent increase since 2019
ADI says ongoing misconceptions about dementia are perpetuating stigma for people who have the condition.
Emily Ong, a person living with dementia, has experienced this firsthand, saying that her needs were not seen as important throughout her journey of receiving a diagnosis and treatment.
“I’ve had to prove things and repeatedly request support before any action was taken,” she says.
This sentiment is echoed in the report, which contains 24 of essays from experts around the world about overarching issues related to attitudes to dementia, as well as case studies of stigma and initiatives to address it. For Brother John-Richard Pagan, one of the contributors to the report, his biggest challenge was getting people to believe him when he said there was a problem.
“Ageism is rampant… People assume that if you are under the age of 65, there is no way that you can be having issues with cognitive impairment. They just don’t take you seriously.”
Likewise, Natalie Ive, who also wrote an essay in the World Alzheimer Report 2024, was told she “didn’t look like she had dementia” because she was diagnosed with younger onset at the age of 47.
Ong says that many healthcare practitioners she has encountered through her advocacy work have disclosed they had received very limited medical training on dementia, which may have contributed to their perception that dementia is a normal part of the ageing process.
“The most concerning part of this is how it could lead to delayed, wrong, or missed diagnosis,” she says.
There is also good news. Barbarino acknowledges the increase in respondents who felt more confident challenging stigma and discrimination compared to 2019.
“I was encouraged to hear more people feel confident to stand up for themselves or for people living with dementia. This shows just how important our public awareness campaigns are to educate, challenge views on dementia, and spark positive behaviour change.”
Every year, ADI runs a public awareness campaign for World Alzheimer’s Month in September. This year’s campaign is centred around the urgent need to act on dementia and Alzheimer’s in this era of new treatments and breakthrough diagnostics, under the theme #TimeToActOnDementia #TimeToActOnAlzheimers.
In addition to the public feeling more empowered to tackle stigma, it appears that more are also aware of the effects of their lifestyle on the risk of developing the condition, with over 58 percent of the general public believing dementia is caused by an unhealthy lifestyle. With 45 percent of dementia cases reported to be impacted by just 14 modifiable risk factors, this is important progress.
The consequences of stigma: Isolation a prominent issue for people living with dementia
Barbarino says that, as a result of increasing stigma, people living with dementia are isolating themselves from others in fear of judgement.
“The survey showed 31 percent of people living with dementia avoid social situations due to concerns regarding the reactions of others, and 36 percent stop applying for or continuing work. From the carer perspective, 43 percent stopped inviting people over and 47 percent stopped accepting invitations to visit friends and family.”
“What’s most alarming about this is we know how damaging isolation can be for people living with dementia; it can worsen symptoms, induce depression, lead to cognitive decline, and cause physical deterioration.”
She says all of this points to the need for governments to prioritise National Dementia Plans and help eradicate stigma around the condition. Yet, out of 194 World Health Organisation (WHO) Member States, only 39 have National Dementia Plans.
Action Area 2 of the Global Action Plan on the Public Health Response to Dementia calls on all of the Member States of the World Health Organization to implement awareness-raising activities and strive towards implementing dementia-friendly initiatives.
“National dementia plans remain the most effective way for governments to develop, legislate, and fund dementia-inclusive policies that address stigma and create more dementia-friendly societies, as well as promoting equitable access to treatment and care,” says Barbarino.
“Encouragingly, in a year when over two billion people around the world are eligible to vote in elections, our survey found that more than 80 percent of the general public believe that they can change the support provided to people with dementia through their vote. We need to galvanise people and create a movement, to advocate to political leaders that the time to act on dementia is now.”
“In 2019, we said it was time to break the taboo and talk about dementia. Five years on, we can – and should – acknowledge the progress that has been made in demystifying dementia, but our work does not end there. Now is the time to act.”
