Cases of dementia are growing in the MENA region at a “shocking” rate, according to the Alzheimer’s Disease International (ADI) federation.
In an interview with Al Arabiya English, ADI CEO Paola Barbarino said dementia in the MENA region “is growing at a rate higher than anywhere else in the world.”
She made the comment ahead of World Alzheimer’s Day observed on September 21.
Barbarino and the not-for-profit organization she leads are on a path to raising awareness of dementia and its effects on families, and formulating a viable national-level plan to minimize the fallout for people with the disease.
Dementia is used to describe brain disorders that affect memory, thinking, behavior and emotion with early symptoms including memory loss, difficulty performing familiar tasks, problems with language and changes in personality.
There is no cure for dementia.
Alzheimer’s makes up for 60 to 70 percent of all dementia cases worldwide, the World Health Organization (WHO) reported in 2021.
Globally, the number of people living with dementia is set to rise to 139 million by 2050 compared to the 55 million people who have the disease now, according to the same WHO report.
There are 10 million new cases of dementia every year, according to the UN-backed agency. As of 2021, it is the seventh leading cause of death among all diseases.
Forecasts showed increases of almost 2,000 percent in some countries by 2050, “especially those in the MENA region,” according to data shared by ADI.
ADI, as an organization, has 105 member nations and another 20 in development. According to Barbarino, its philosophy is to compel wealthy countries to contribute toward research and care and insist on a commitment to a national dementia plan.
The WHO’s global plan on dementia urges governments to develop national policies by 2025 that will help people with the disease. It would include, promoting public awareness and improving the quality of healthcare, social care and long-term support and services for people with dementia and their families.
“My end game would be to get a vast majority countries to make some commitment towards a dementia action plan, even if it is only a public health campaign,” Barbarino said.
Qatar is the only country in the Gulf with a national dementia plan, according to the chief executive.
Barbarino blames stigma for the lack of systematic data collection and financial programs to care for people with Alzheimer’s.
“People just do not want to talk about it,” Barbarino said, “entirely because of stigma.”
“A lot of countries are still in denial. The stigma is mounting. I have spoken to health ministers in Africa who have told me that they don’t have dementia in their country, which is nonsense. It is impossible,” she claimed.
At least 35 percent of caregivers globally said that they have hidden the diagnosis of dementia of a family member, according to information furnished by ADI.
Saudi Arabia, UAE impact
A social group in the UAE, comprised of 500 members – mostly with dementia – frequently meets to engage in fun activities like bowling, chess, and sometimes cat therapy – a decision inspired by the founder’s three-year-old cat, Mocha.
Desiree Vlekken founded the social enterprise 4get-me-not after her father developed the disease.
“We could’ve mitigated the situation. We could’ve rushed him to the geriatrician. We didn’t know which doctor to go to. It’s always the GP (General Practitioner),” she told Al Arabiya English.
“That’s one of the reasons why 4get-me-not started. We want to be a center for information,” Vlekken said, adding that the group is “growing massively.”
She told Al Arabiya English, “Families are still not comfortable discussing Alzheimer’s.”
“It took many months if not years before they agreed to let their loved ones with dementia join 4get-me-not activities. Lots of reassurances were required before they stepped out with us,” she added.
She concluded, “Generally, what we noticed was their fear of being discriminated.”
Vlekken’s social enterprise is fully funded by private companies whose employees sometimes engage with its members as part of a more extensive internal CSR campaign.
The operation does not receive financial support from the UAE government, although it receives “patronage support” from the Ministry of Community Development (MoCD), she said.
A senior home run by the MoCD was “the first senior home that opened their doors” for the now almost 10-year-old operation.
The founder is also working with similar organizations in Jordan and Oman, cross-sharing relevant information.
While Vlekken credits the relevant UAE officials for providing support, she hopes for more active involvement. “We are slowly connecting,” she added.
Meanwhile, the ADI CEO said they have a “very successful association” backed by the government in Saudi Arabia . “They’ve made massive progress there,” she added.
The Saudi Alzheimer’s Disease Association was founded in 2009 and has been a member of ADI since 2013. The association is based in Riyadh, with branches operating through other charities in the Jeddah and Eastern regions.
Some of the services provided by the Saudi Arabian operation include counseling, day care, workshops, support groups, and training for caregivers.
These include important basic guidelines for dealing with Alzheimer’s patients, such as: palliative treatment, nutrition and food, personal hygiene, and more.
On August 29, the association held a multi-day training and awareness program, aimed at caregivers.
In a 2018 report by the Global Coalition on Aging (GCOA) titled ‘Dementia Innovation Readiness Index,’ Saudi Arabia was found to have a strong score in government funding, care standards, and access to care.
The report added that “Saudi Arabia is in a unique position to tackle the illness” because “over-65s make up only 3.3 percent of the population, meaning the Kingdom has time to plan for an issue that is only going to grow.”
However, the Kingdom scored relatively lower in strategy, commitment, and the built environment. A lower score in the last grading called for creating dementia-friendly communities to support independence and community living.
Barbarino said cultural differences in the region – to the West – have both pros and cons.
Culturally, since countries in the Middle East revere elders, a great deal of financial and emotional support is provided to victims of dementia within the family dynamic.
Availability of data
In the region, “data is quite rare with regard to epidemiology,” said Dr. Tareq Qassem, lead for the Clinical Academic Group for Older Adults at al-Amal Hospital in Dubai, in an interview with Al Arabiya English.
“The data cited is mostly from extrapolations from the population,” he added.
“The nature of questionnaires could feel excessive” when experts try to study people showing signs of dementia,” said Qassem, who is also an adjunct Professor at the Mohammed Bin Rashid University of Medicine and Health Sciences (MBRU), adding that “there are not enough tools in the Arab world to assess dementia.”
The GCOA’s earlier report from 2018 also said that “the disease remains largely unacknowledged, leading to little or no care provision and poor documentation.”
Additionally, using a western interpretation of a test or questionnaire can mean losing critical context prevalent in the regions.
Dr. Hamad al-Sinawi, Chairman of the Oman Alzheimer’s Society and Consultant and Psychiatrist at the Sultan Qaboos University Hospital in Muscat, Oman, concurs.
“The issues faced by MENA countries regarding dementia differ greatly to other regions, which is why national dementia plans need to be localized and tailored to these specific issues,” said al-Sinawi.
“The root-cause problems we need to focus our efforts and energy on are a lack of proper health education and health care services. We are still dealing with a stigma around memory loss being considered a normal part of the ageing process,” the doctor explained.
An ADI member in Indonesia is reportedly conducting findings from the country that Barbarino thinks can be repurposed in MENA.
This availability of data is crucial, she said, since many of the data-finding methods used in the west cannot be transferred to the MENA region due to religious, cultural and language differences.
Dementia is also widely considered a side-effect of growing old. Her solution to tackling this social taboo is to raise more awareness of the disease.
Since dementia deals with subjective thoughts and feelings, Qassem said that such studies’ success rates could falter.
Qassem also recommended having national-level campaigns to “let people know that it is not normal for a person to have Alzheimer’s.”
But apart from all medical advances, Qassem said simply engaging in physical activity, especially in mid-life, can vastly reduce the risk of dementia.
“A sedentary lifestyle kills; it gives people dementia, heart disease, diabetes,” he said with concern, adding that it was equally important to “keep the mind active as well” and maintain a good lifestyle free of vices, mainly smoking.
Qassem continues to work on adapting the international standard to suit the regional population.
Al Arabiya English has reached out to the UAE’s Department of Health for comment on ADI’s forecast and steps in place to support victims of dementia.