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), was underpinned by a survey which was analysed by London School of Economics and Political Science (LSE), found a shocking 80% of the public still incorrectly believe dementia is a normal part of ageing rather than a medical condition, a 14% increase since the survey was last conducted in 2019.
“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% of people living with dementia indicated they’d experienced stigma, a 5% increase since 2019
ADI says ongoing misconceptions about dementia are perpetuating stigma for people who have the condition.
“In my experience with volunteering with the Dementia Foundation over the years, learning about Alzheimer's has profoundly impacted my knowledge and shedding light on the complexities of memory and cognition, fostering empathy, and driving a passion for understanding and supporting those affected.” expresses Kisha Antoine, executive member of the Dominica Dementia Foundation.
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.
“Being a caregiver - I developed caregiver stress syndrome. I developed physical and mental symptoms and ailments, and was soon having challenges balancing family care, the demands of my professional job and that of caring for my loved one. I was burnt out and eventually, I had to relinquish caring for my loved one to a care facility. It was then I observed the mental changes within me. Unfortunately, I was further victimized at my workplace and among members within my professional community as many treated me like I was mentally unstable and unfit to maintain professional communication. It was disheartening and isolating.” expressed by anonymous former caregiver in Dominica.
Caregiver stress syndrome is a condition characterized by physical, mental and emotional exhaustion. It typically results from a person neglecting their own physical and emotional health because they are focused on caring for an ill, injured or disabled loved one.There is also good news Ms.Patterson acknowledges the increase in respondents who felt more confident to tackle stigma than in 2019 but also how we can all make a change by supporting World Alzheimer’s Month
“This September is World Alzheimer’s Month and we can all work together to raise awareness of dementia and Alzheimer’s by sharing the hashtags #TimeToActOnDementia #TimeToActOnAlzheimers on social media or participating in memory walks, cafes and other events organised by the Dominica Dementia Foundation,” says Rianna Patterson, founder of the Dominica Dementia Foundation.
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% of the general public believing dementia is caused by an unhealthy lifestyle. With 45% 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
Rianna Patterson says that, due to increasing stigma, people living with dementia are isolating themselves.
“The results of the survey found that 31% of people living with the condition avoided social situations and 36% stopped applying for work, through fear of being stigmatised. The results from carers was equally concerning, with 47% stopping to accept invitations to visit friends and family and 43% stopped inviting people over.”
“We know that social isolation is a risk factor for developing dementia and can worsen symptoms or mental health, this is therefore incredibly concerning.”
On making a change, Barbarino concludes:
“Encouragingly, in a year when over 2 billion people around the world are eligible to vote in elections, our survey found that more than 80% 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.”
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