Part three of a four-part series
The Muratsan University Hospital Web site advertises diagnostic services at its Center of Memory Impairment in Yerevan. But within the clinic, people with Alzheimer’s disease—a severe form of dementia—are nowhere to be seen.
Sitting in a sunny office, past the drab hallways of the pediatrics unit where mothers holding their infants wait in line or lean back into threadbare armchairs, the head of Muratsan Hospital, Dr. Kamsar Babinyan, spreads out his hands. “We do not have Alzheimer’s patients here,” he says.
And apparently, neither does anyone else.
While Alzheimer’s disease and other forms of dementia—commonly associated with memory loss and the gradual inability to perform even the simplest daily tasks—affect an estimated 20,000 to 30,000 adults above the age of 65 in Armenia, it is surprisingly difficult to find patients and specialized doctors.
“The problem is that people think [Alzheimer’s] is shameful and they don’t want to show their shame to the whole world,” says Dr. Hovhannes Manvelyan, chairman of the Yerevan State Medical University Neurology Department and possibly the only neurologist in Armenia specialized in Alzheimer’s disease. Since dementia carries such a heavy social stigma, families often prefer to shroud their disgrace behind a veil of silence. For many patients, this means living behind locked doors.
But at the Polyclinic No. 2, in the heart of Yerevan’s city center, Manvelyan is trying to raise awareness about the issue. Since returning to Armenia from a stint working at the University of California, San Francisco, he says things have begun to change.
“When I came to Armenia from the U.S. in 2006, we didn’t even have an Alzheimer’s disease diagnosis,” Manvelyan says. “All these cases were accepted as a normal part of aging—from abnormal living, to forgetting, to depression.”
In his spacious office behind a slightly sagging doorway, Manvelyan leans over a middle-aged man stretched out on a metal cot. A group of medical students wearing long white lab coats crowd around to watch as Manvelyan pokes and prods the patient to test his reflexes. The man’s worried-looking wife hovers nearby.
After a brief consultation, Manvelyan pats the patient on the back. His wife smiles and heads toward the door.
Awareness of the disease, Manvelyan says, has caught on within the medical community thanks to university lectures and training sessions for family practitioners, who are often the gatekeepers to specialized care in Armenia. “We spent a long time trying to show that we are dealing with a disease and the earlier the diagnosis, the more success we will have,” Manvelyan says.
While there is no cure for Alzheimer’s, generic brand prescriptions available in Armenia since the end of 2009 can somewhat slow its progression. “Time is not only money,” Manvelyan says. “It is also brain.”
The president of Armenia’s fledgling National Alzheimer’s Association, Professor Mikhail Aghajanov, is less optimistic. Though Armenia is the only country from the Commonwealth of Independent States—after Russia—to join Alzheimer’s Disease International in 2010, he says the country still has a long way to go.
According to Aghajanov, the main problem is grappling with the mounting costs of the disease. While every patient ideally requires the attention of at least 10 professionals, from psychologists and neurologists to speech therapists and round-the-clock nurses, not many families can afford such a comprehensive level of care. “It’s an expensive disease,” Aghajanov says. “Every patient costs on average $18,000 a year.”
The issue is further exacerbated by a lack of specialized doctors and difficult access to more specific and aggressive medications offered in Europe and the U.S. “We use medicines that improve the blood circulation in the brain,” Aghajanov says about inadequate treatments available in Armenia. “When my foreign colleagues come, they bring me drugs as a present but they’re not enough to share with all our patients.”
Despite plans to build a specialized clinic for people suffering from dementia, the project has come to a standstill.
“Nobody works without payment and we have no money,” Aghajanov says. Occasional $500 checks from Alzheimer’s Disease International in London barely cover expenses for printing informational leaflets and organizing conferences on World Alzheimer’s Day on September 21.
“We have no funding,” Aghajanov says.
Sitting in a pizza parlor along one of Yerevan’s main streets, Suren and Lilit Saryan say issues surrounding Alzheimer’s disease hit close to home. When Suren Saryan’s mother first developed symptoms of dementia, she was only in her 40s. The husband and wife have since experienced firsthand the vagaries of the healthcare system.
“We discovered the disease late because [my mother] was trying hard to hide that she was forgetting things,” Suren Saryan says. “It was a very difficult time and in the end she was doing things children do, like playing with dolls and stealing candy and forgetting what she was saying.”
After a month of tests and specialized visits, a neurologist reached the final verdict—Alzheimer’s disease. What loomed ahead was almost a decade of internet research about symptoms and treatments and frantic appeals for help at various hospitals and institutions.
“The doctors generally didn’t tell us any details and we didn’t feel secure that they knew what they were doing,” Lilit Saryan says. “They prescribed medications to activate the circulation of blood in the brain and they could do nothing else.”
In addition to the emotional drain of the disease, costs for care soon rose well beyond the patient’s meager 40,000 dram ($98) pension. Even pooling money from various close family members was not sufficient to cover the 15,000 drams ($37) per day required for specialized care at a hospital.
Finally, the family hired a caretaker with no specific knowledge of the disease. Between expensive medications, which often had to be ordered from Russia or Germany, and the caretaker’s salary, monthly bills fluctuated between $400 and $800.
Worse still, friends and relatives often voiced scathing opinions about the hiring of a caretaker. “People were saying ‘Why don’t you take care of the person yourself,’” Lilit Saryan says. “They don’t understand how difficult it is. They blamed us.”
Though Suren Saryan’s mother passed away in February 2012 at the age of 58, the couple has not forgotten the devastating effects of Alzheimer’s. “After learning about this disease we learned of many others who are ill,” says Lilit Saryan, a human resources manager at the Organization of the Petroleum Exporting Countries. “We decided one day to open a hospital for such people with specialized staff so their relatives do not torture them.”
Suren Saryan nods in agreement. A businessman and director of Pizza Peppino in Yerevan, he says he is looking for funding. “Then we will find a good place with a huge yard where sick people can walk and spend time,” he says. “We don’t know if we will succeed but we will do our best.”
And in a country where many Alzheimer’s patients and their families have nowhere to turn, even a small step is a good step.