Middle East and North Africa unprepared for coming dementia epidemic

When she first noticed that her elderly father's behaviour was becoming more erratic, Mahbouba el-Hidri sought help. But every doctor she saw would give a different diagnosis, the 51-year-old Tunisian woman said. "The doctors would just prescribe painkillers," she explained. "So eventually we abandoned the doctors and did everything ourselves. We knew he needed love and care. And at the time, we didn't know about any organisations that would help care for Alzheimer's patients."

Palestinian woman Leila had a similar experience. "When [my mother] first got ill, I didn't understand what she was suffering from," Leila explained; she didn't want to give her real name for reasons of privacy. Leila's mother started asking about household objects – like clothing or a painting – that had already been in the house for years. "I was annoyed with her at first," Leila admitted. "But then I started to read about the symptoms and discovered they are linked to dementia."

There is a lack of medical specialists in the Palestinian territories, Leila said, and she found it extremely difficult to take care of her mother, who also had diabetes.

Huge increases expected

According to researchers, more people living in the Middle East are going to have to deal with these kinds of problems in the future.

In a report published in the British medical journal The Lancet in early February, researchers used demographic and public health data to come up with estimates on how many people might suffer from dementia over the next three decades.

They concluded that there would be increases all over the world owing to factors like population growth and longer life expectancy. However, they cautioned, the largest increases would happen in North Africa and the Middle East.

While Western Europe will see cases of dementia rise 74% by 2050, the caseload will rise by as much as 400% in North Africa and the Middle East. 

In 2018, the Global Coalition on Aging estimated that around 2 million people in the Middle East were suffering from dementia, while acknowledging that statistics were hard to come by.

Why is the Middle East worse off?

The reasons for this huge increase are primarily demographic and also involve life expectancy. Simply put, there will be more people in the region and they will be living longer, so there will be more dementia.

But there are also other risk factors, and these may partially explain the big difference between the Middle East and elsewhere.

Factors like heart disease, smoking, diabetes, mid-life obesity, low levels of physical activity, social isolation and air pollution are all thought to be indicators for dementia in later life. Western nations have become better at mitigating some of these.

Low education and illiteracy (as measured over a person's total lifespan) are factors, too, because doctors believe they are indicators of cognitive capacity: if you don't read, you're not exercising your brain as much as people who do, for example, and studies suggest you are three times as likely to eventually show signs of dementia.

Illiteracy is a major risk factor in the Middle East. Average global literacy rates sit at around 86%. The Middle East lags behind, with a 79% rate recorded in 2019. But it used to be much lower: around 43% in 1973. In 2050, the generation born around 1973, with those much lower literacy rates, will be in their 70s.

Unacknowledged epidemic

Abdulrazak Abyad, a Lebanese doctor who specialises in aged care, has noted that there are few statistics on dementia in the Middle East, as well as few geriatric medical specialists or care facilities. The founder of several institutions, including the Middle East Association on Aging and Alzheimer's, Abyad is concerned that old people in the region are prone to dementia younger.

"We do see early incidence – up to 10 years earlier than in the West – of other age-related diseases, such as stroke and heart disease in Egypt, where statistics are available," Abyad wrote in a 2014 study. "Unfortunately, this suggests that the Middle East may face the burden of Alzheimer's disease and related dementias much earlier than in the West."

Increased numbers of elderly patients will be a problem in the Middle East for other reasons, too: besides a lack of medical specialists, care facilities and statistics, there's also a lack of knowledge.

Those working in geriatric health say dementia is generally underreported and often unacknowledged by public health authorities.

Care in the home

This is partly because of the way that the elderly are cared for in Middle Eastern society.

"Elderly adults are highly respected within Arab culture, and placing one's elderly relatives somewhere outside their home is considered an abandonment of family duty," Saudi researchers explained in a 2019 regional review of investigations into dementia in Arab-majority countries.

There's really nowhere to turn, said Fatima, an Egyptian doctor, who preferred not to give her real name because she was speaking publicly about matters her family considered private. Fatima looked after her father, who had dementia, for 15 years – he died in 2019 – and said it was very stressful.

"But we dealt with the hardship because of our love for him and because God tells us we should honour our parents," she told DW. Fatima eventually founded a Facebook group to help educate Egyptians about dementia.

A lot of people don't know enough about dementia to know how best to care for their elderly, noted Amal Saif, the founder of the Yemen Foundation against Alzheimer Dementia, or YFAAD. She started the organisation after caring for her own dementia-affected mother for 10 years.

Shame and gossip

"It was very, very difficult in Yemen," she told DW. "There are very few places where you can take your parent or get any guidance," explained the trained haematologist. "Some families are open about it, but they're confused," she continued. "They think it's a normal part of aging, but they don't know how to deal with the psychological changes – so they might just lock the relative in a room," Saif told DW. "They don't know how to make the patient's life better."

"Other families see it as something shameful that might hurt the family's reputation. You know, if their mother was like that, maybe it's genetic and they will be like this, too," Saif said.

Palestinian caregiver Leila experienced this. Her siblings blamed fate and Leila for their mother's condition, and others in her community were cruel. "They don't show mercy to anyone who suffers from such diseases," she said bitterly. "They become a subject for gossip."

Cultural changes

Lebanese aged care specialist Abyad noted another problem: the long-established system of family care for the elderly is changing.

"Factors such as youth migration for employment and educational gaps between family members account for the erosion of the family support system," he wrote. As a result, "families face great difficulties in supporting their dependent elderly."

Mahbouba el-Hidri knows this from painful experience. Her father lost all but two of his close friends and never left the house. She took care of her father for over 25 years. "I feel that I succeeded in taking care of him to some extent," she said sadly. "We still miss him so much. Even with his illness, he had a special place with us."

Leila is not as confident. "It was so exhausting, psychologically too," she recalled. "Despite everything, I feel like I didn't do enough. I only hope that my mother is resting comfortably now."

Cathrin Schaer, Tarak Guizani and Mohammed Magdy

© Deutsche Welle 2022