Incurable and increasingly prevalent, dementia is a disease that today affects about 50 million people worldwide. Millions more are diagnosed each year with the most common neurodegenerative form: Alzheimer’s disease. The risks generally increase with age, but many people develop symptoms of dementia before they reach the age of 65.
Inheritable genetic conditions can lead to familial or early-onset Alzheimer’s, which can afflict people as young as 30.
Despite growing awareness of the global impact of dementia, experts say lingering misconceptions around the disease persist in the Middle East, often leading to late diagnosis, stigma and social isolation.
World Alzheimer’s Month, an international campaign to raise awareness and challenge the stigma that surrounds dementia, is marked every September.
The 21st of the month is recognized as the official day to improve public awareness and attitudes regarding the disease.
Experts say there is an immediate need to challenge misconceptions and help some of the most vulnerable people in Middle Eastern communities.
“In my experience, awareness about Alzheimer’s is quite low in the region, so people don’t know too much about this disease,” Dr. Karoly Zoltan Vadasdi, a neurology specialist at Dubai’s Canadian Specialist Hospital added.
“There’s an immediate need to take steps or some measures to address this lack of awareness because Alzheimer’s is the most common form of dementia in elderly patients, especially those above the 60-65 age group.”
There is no known cure for Alzheimer’s, which can start developing decades before obvious symptoms emerge. The disease, which is notoriously hard to slow down, continues to baffle medical scientists despite years of extensive research.
Part of the problem with developing a cure is that the causes of Alzheimer’s are still not fully understood. The disease is also challenging to combat because it is not caused by an invading pathogen, but arises from an individual’s own biology.
However, for those with early-stage Alzheimer’s, which doctors can spot through brain scans and lumbar punctures, the picture is not entirely bleak. Some medications can reduce memory loss, treat changing cognitive symptoms and aid concentration. Nevertheless, experts say it is essential to further educate the public about the early stages of dementia.
According to 2019 statistics made available by the Saudi Health Ministry, there are 130,000 cases of Alzheimer’s in the Kingdom. Despite the high number, public knowledge about the condition remains limited.
For a 2018 report entitled “Perception and attitude of the general population towards Alzheimer’s disease in Jeddah, Saudi Arabia,” author Hussein Algahtani and his research team interviewed 1,698 residents in shopping malls and public places.
They found that while 89 percent of participants had heard of Alzheimer’s, 44.9 percent believed that it is a normal part of ageing.
About a third of those asked believed that Alzheimer’s is treatable with medication, while 24.6 percent thought there is no treatment, and about 30 percent believed Saudi society stigmatizes people with the disease.
“There are many conflicting beliefs about Alzheimer’s disease in the general population,” said Algahtani, adding that conducting a study on “public awareness, attitude and knowledge” of it “is useful in decreasing discrimination and stigmatization.”
“The results of the study suggest that the perception of the general public of Alzheimer’s disease is lagging behind,” he said. “Many wrong beliefs were identified in the general public regarding the causes and management,” he added. “The findings of our study suggest that more information about Alzheimer’s disease would be valuable and beneficial for everyone,” said Algahtani.
“Awareness campaigns and public education are needed to increase the knowledge of the public regarding aspects of the disease, including prevention, causes and management,”
he added. “Dissemination of information about Alzheimer’s disease should be of high priority. Increased awareness will lead to earlier detection of Alzheimer’s disease and other dementia cases, and appropriate care and management of those persons.”
The conclusions of Algahtani’s report do not surprise Vadasdi, who said: “The disease is underdiagnosed in the Middle East, which stems from a misconception about Alzheimer’s and dementia.”
Vadasdi added: “Most people incorrectly associate dementia with senility, and believe that declining mental health is a normal part of ageing.”
He said: “It’s true that when people get older they get a bit forgetful and become a little slower in thinking, but dementia is never caused by ageing itself.
“It’s important to emphasize that Alzheimer’s is a neurodegenerative disease, which means there’s a gradual loss of nerve cells in certain parts of the brain.”
Vadasdi said: “Another misconception is that Alzheimer’s or dementia is inherited. People are afraid that if one of their parents has it, they’ll inherit the disease.”
What is undeniable, though, is that full-blown Alzheimer’s is devastating for the patient and has a knock-on effect on family members and friends. “Those who suffer from dementia need continuous, sometimes even 24-hour supervision, depending on the severity of the disease and the loss of cognitive abilities,” said Vadasdi.
“It’s a huge burden for family members, both emotionally and financially. Patients can also suffer from depression or become anxious, agitated or paranoid because of the loss of cognitive functions, including memory, orientation, perception. Family members need a lot of patience when looking after the patient.”
It is believed that more than 2.3 million people in the Middle East and North Africa live with dementia, although the figure is hard to verify.
Some countries have no organization to address the challenge posed by dementia and Alzheimer’s.
Even as he points to an “urgent need to increase awareness of Alzheimer’s in society,” Dr. Hania Sobierajska, a specialist in internal medicine at the UAE’s Bareen International Hospital, praises local health authorities for conducting campaigns and workshops to reduce barriers to diagnosing the disease.
The Saudi Alzheimer’s Disease Association (SADA), one of 90 associations that make up Alzheimer’s Disease International (ADI), provides support and assistance to patients and their families. To mark World Alzheimer’s Day, the Saudi Health Ministry hosts awareness drives across the Kingdom.
Via SADA, the ministry pays for live-in carers and weekly visits by doctors, nurses, psychologists and therapists, in addition to transport costs and medication.
SADA holds workshops, online training courses for carers, and year-round awareness campaigns on TV, radio and social media.
“Six years ago we hadn’t even heard about the word Alzheimer’s, but lately it has become known through word of mouth, albeit merely as a disease about forgetfulness,” said SADA’s Sara Al-Rasheed. Sobierajska said “the number of communities supporting those with Alzheimer’s” across the Gulf Cooperation Council (GCC) bloc is “insufficient.”
While researchers and scientists continue to hunt for a cure, in a region where over-65s make up only a tiny percentage of the population, cases of dementia and Alzheimer’s are likely to surge as the population ages. Experts say Saudi Arabia and the wider GCC must plan for a health burden that will only grow.