Dr. Jane Mahakian at center

Fighting Aging in Armenia: Gerontologist Jane Mahakian Has a Plan

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LOS ANGELES and YEREVAN — My great-grandmother, a survivor of the Armenian genocide and the Great Repatriation to the Armenian SSR, was considered someone who had “lost her mind” during the last years of her life. Now, her condition, mostly unknown 50 years ago, would be diagnosed as dementia or Alzheimer’s disease making the life of hers and that of people who surrounded her much easier.

The stigma of having an illness and lack of education within Armenia creates obstacles in understanding and treating one of the fastest-developing diseases of the 21st century.

That was the prevailing situation when Jane Mahakian, a licensed mental health clinician, a gerontologist with more than 30 years of experience working with the adults suffering from dementia and Alzheimer’s disease in the US, decided to establish a non-profit organization in Armenia, called Alzheimer’s Care Armenia in 2017.

Mahakian successfully led a similar practice for many years in California with Aging Matters Inc., a full-service care management and consulting firm for people who have a loved one with dementia.

In 2004 Jane met with physicians in Armenia and realized that there are a lot of “gaps in care.” “There were no ideas about dementia, there were no programs, there was nothing!” remembers Mahakian. Even before that she stayed in Armenia for nine months in 1982 and studied psychology. “My love for my homeland started when I was very young. I wanted to be in Armenia, I wanted to feel Armenian. Because I grew up in Palos Verdes, where there were no Armenians, I was seeking and searching for my culture, my identity,” she explained.

Years later, together with a leading dementia community in the US, the Silverado Memory Care, she cosponsored an Alzheimer’s conference at the Yerevan State Medical University in Armenia. Among the 424 attendants were healthcare professionals and families with patients suffering from the disease. Because of that conference things just “blew up” by raising awareness about aging, dementia and Alzheimer’s disease in the country. Three years later Jane Mahakian thinks that we are still “touching the surface.”

Robin the Robot with seniors in Armenia

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“Our [Alzheimer’s Care Armenia] whole mission is to develop sustainable programs and services for people with Alzheimer’s disease, other dementias as well as support their families. These projects definitely have helped develop the awareness of the problem,” she said.

Partnering with Mission Armenia the organization established the Armenia National Alzheimer’s Caregiver helpline. It also founded Memory Clubs in different cities where older adults can fight memory loss through mental exercises and activities. Mahakian said she thought that these day programs are much needed options for the elderly population.

“The visibility and awareness that will come out of these varieties of programs move the whole process,” she said.

According to the Alzheimer’s International World Report, in 2015 approximately 24,000 people were suffering from dementia in Armenia. In 2019, 143 residents of the Nork Old Age Home were tested for a memory screening. Only 27 people scored in a normal rage.

“That’s huge!” exclaimed Mahakian. “This led us to believe that (if we can generalize from the example of the Nork Old Age Home) there is an increase in prevalence of Alzheimer’s and dementia in the country.”

Since there are no standard procedures for diagnostics, patients are often undiagnosed, misdiagnosed or not diagnosed at all. In order to help with the understanding of the disease this Summer Alzheimer’s Care Armenia and Data Point Armenia put together the first Alzheimer’s Disease Caregiver Guide, with 10,000 copies distributed to primary care physicians throughout the country by the Ministry of Health. The guide lists all the resources for people who have loved one with dementia. It will also become available online.

She noted that among the questions are: “When mom begins to leave the home, what do you do? How do you redirect them? Understanding the disease process when they start [for example] not being able to swallow properly, all of these types of things are balanced. How can we improve the balance of the life of someone who has Alzheimer’s disease?”

Mahakian noted that there is not enough information and statistics about the elderly population suffering from Alzheimer’s disease, often due to misdiagnosis. “Sometimes they are misdiagnosed with having a mental illness like schizophrenia or some other kind of diagnosis. But just like in the United States and worldwide, Alzheimer’s disease, unfortunately, is on the increase.”

She said she thinks that the main job that has to be done is prevention: exercise, diet, having cognitive games or exercises. It’s all in the plan of the National Care program that Mahakian is working on.

By 2050 the number of seniors in the United States will double to 89 million people, according to the Institute of Gerontology in the University of Georgia. This rate shows growth that is twice as fast as the under-50 population. In Armenia the picture is even more dire. About 12 percent of the population are elderly now. This is expected to increase about 20 percent by 2030.

Orran Memory Club

Mahakian has a plan ready — the Brain Help Armenia Project — a multidisciplinary program that will cover one of the biggest gaps in care, namely proper memory screening. She has teamed up with the Armenian EyeCare Project to begin screening some of their patients. The pilot screening was done in September with 25 patients and three-quarter of them showed some form of a memory impairment. The project will travel to every region of Armenia and provide in-home cognitive treatments as well as physical therapy, occupational therapy, speech therapy, palliative and end of life care.

“People in Armenia don’t want to send their loved ones to the memory care community. The goal is to keep them home and have the highest level of quality of life possible for that patient,” said Mahakian. The services are going to be free of cost and will “raise the bar” and show the [medical] professionals in Armenia what is quality elderly care, how do you create a life for someone who has Alzheimer’s disease. “Because that life has a meaning. That person needs a new purpose. It’s about showing the family what their loved one can do and not what he or she can’t,” adds Mahakian.

Training is much needed in the medical field as well, with medical professionals who are dealing with the patients on a daily basis. Mahakian is working closely with the Ministry of Health to provide them with the certified dementia training. “The gatekeepers in Armenia are the primary physicians. They have the first point of contact. When they understand what this disease is, then they will refer their patients to the neurologist,” she adds with confidence.

Mahakian was back in the US in July. Since then she has worked with her team virtually while the COVID surged again in Armenia. Her day starts around 3-4 a.m.,  to catch up with the time difference. She shares the latest success of another unprecedented project that she did before returning to California. Over a cup of coffee with Karen Khachikyan, she got the idea to introduce the famous Robin the Robot to the residents of the Nork Old Age Home. The nearly four-foot-tall Robin was previously used at the UCLA Mattel Children’s Hospital to provide emotional support to the young patients. Mahakian knew that the same experience could be “life-changing” for the older adults especially during the pandemic when they felt lonely. Using the robot to play cognitive games, help the residents with their emotions would make a difference. The results bore out the expectation.

The robot will continue to stay at the facility until May of 2022. “It’s like a family: They [residents] love him, they hug and kiss him. They just feel very close to Robin,” said Mahakian. The Robin the Robot project was sponsored by the H. Hovnanian Family Foundation.

Dr. Jane Mahakian at the Nork Old Age Home Healthy Aging Memory Club

Mahakian’s grandparents played a significant role in shaping her career path. Both grandparents were Genocide survivors from Izmir and Van who later emigrated to the US. “I quickly realized at a young age that the older person has much wisdom, and I wanted to learn as much as I could from them. They truly were my best friends growing up. My grandparents are no longer here, however the gifts they gave to me of their love, wisdom and compassion are forever mine to keep. I know the work I am doing in Armenia is a direct reflection of the love I have for older people. They are behind my passion for all I do,” said Mahakian.

Mahakian co-authored a book titled I Hear You with writer and editor Alyson Kuhn. The book is based on the extensive email conversation between Mahakian and Kuhn when Kuhn’s mother suffered from dementia. Its goal is to help with talking and listening to people with Alzheimer’s and dementia, understanding them and promoting a meaningful life even in that difficult period of their life.

“Our elders are our history,” said Mahakian with a smile.

 

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