Health

Stigma, Lack of Awareness Prevent Care of Dementia in Aging Sri Lanka

 

Article Highlights

COLOMBO, SRI LANKA – Vasanthi Weerasinghe is a single mother of three children. They live in a small, part-brick, part-plank house in Uswetakeiyawa, a suburb of Colombo, the commercial capital of Sri Lanka.

Weerasinghe earns a meager income from doing domestic work in three houses nearby. In addition to supporting her children, she also cares for her mother, Mary Margaret Perera, who lives with the family.

“I can hardly feed myself and my children,” Weerasinghe says, with tears in her eyes. “How can I get her the medicines and the good food she needs?”

Making her caregiving duties more challenging, her mother is “going mad,” she says. For the last eight months, her mother has become more aggressive.

Weerasinghe, who has never heard of dementia or Alzheimer’s disease, says she has had to tie her mother to a beam with a long rope in the small shed adjoining their house when she leaves for work every morning.

“What else can I do?” she asks. “My mother raised me and six siblings after our father died when we were young. I am the youngest in the family, and she came to help me when my husband left me. None of my sisters or brothers will help me look after her. But I can’t abandon her.” 

Her neighbors helped her to build this shed, which is attached to the house. It has a mud floor, concrete beams and wooden planks. The room is dark and damp, and there is a strong stench of urine.

Weerasinghe says she obtains sedatives from a nearby doctor that make her mother “sleepy and quiet” throughout the night. It is currently the evening, and Perera is docile and subdued.

But tomorrow will be another day of confused aggression and desperate solutions.

Weerasinghe is not alone. Many families in Sri Lanka are struggling to care for aging family members, yet they are unaware of their medical conditions and how to treat them.

Doctors say that dementia is becoming an epidemic in Sri Lanka with its rapidly aging population. But there is a lack of awareness among the general population and the medical community about what the condition is, how to diagnose it and how to treat it. Other challenges for people with dementia and their families include social stigma and the cost of care. One foundation is striving to lead the way in changing this.

Sri Lanka is one of the fastest-aging countries in the world, according to the World Bank. Sri Lankans over 60 years of age are predicted to make up nearly one-third of the population by 2050.

The number of citizens with dementia in Sri Lanka is on the rise, says Dr. H.B. “Tami” Tamitegama, the founder and president of Lanka Alzheimer’s Foundation, a community organization that aims to improve quality of life for people with Alzheimer’s disease and related disorders and to provide support to their families.

“There are no confirmed statistics, but we’re looking at about 150,000 persons with dementia in Sri Lanka,” he says. “And that number will gradually escalate, and we’ll have around half a million people by 2040-2050 with dementia – unless, of course, we find a miracle cure.”

Alzheimer’s disease is one of the many forms of dementia, he says. Dementia is an umbrella term encompassing more than 100 physical disorders of the brain. Alzheimer’s disease is the most common of these disorders and is many times used to refer to them because “dementia” carries a negative connotation, he says.

Tamitegama says that dementia doesn’t just affect the people who suffer from it, but also their families as well.

“This means that almost every person in Sri Lanka will be familiar with dementia because every larger family will have at least one person with dementia,” he says.

To address this growing challenge, Tamitegama says he created Lanka Alzheimer’s Foundation in 2001 in order to provide services to people with dementia and their families from its base in Colombo.

“We feel it is an epidemic,” Tamitegama says, “and the world Alzheimer’s family recognizes this as a serious threat to the well-being of mankind.”

The organization aims to raise awareness about what Alzheimer’s disease and related disorders are – an awareness that Tamitegama says is currently lacking in both the general population and even the medical community.

Kumudini Ameen says that she learned that her father had Alzheimer’s disease thanks to the foundation.

Ameen says that her father was a self-made entrepreneur, leading an active and full life even into his 80s. Then, about five years ago, she began to notice changes in him. He started to forget things, to become suddenly angry, and occasionally to feel disoriented and to get lost.

“The changes were so gradual, that we hardly noticed it at first,” Ameen says. “And even when I began to notice, I was not willing to accept that something was really happening.”

Then, while shopping at a supermarket one day in Colombo, she came across a stall set up by the Lanka Alzheimer’s Foundation. Listening to them talk about the symptoms of Alzheimer’s disease, she began to realize that her father’s symptoms were indeed akin to its early stages.

Tamitegama says that the lack of awareness even extends to medical professionals, preventing those with dementia from receiving the care that they need.

“It’s a fairly new set of disorders, and doctors are often unable to correctly diagnose, or they put it down to mental health issues,” Tamitegama says. “Detecting dementia is not a simple matter, as there are allied symptoms. In Sri Lanka, the classic way of diagnosing it is if the patient is displaying aggressive behavior.”

He says Sri Lanka needs more skilled professionals in this field who can properly diagnose dementia.

“There is no single geriatrics specialist in Sri Lanka,” he says. “So we lack the advocacy within the medical field. All medical professionals – nurse, doctor, specialist consultant – should have an idea of what dementia is and the symptoms and the options for care. We need specialists to look after the fragile nature of aging, and we don’t have that.”

In order to move in this direction, the Lanka Alzheimer’s Foundation now has an in-house geriatric nurse, João Marçal-Grilo. He is a volunteer from the United Kingdom with Voluntary Service Overseas, an international development charity.  

Marçal-Grilo says that even if families do seek medical care, many health professionals in Sri Lanka are not trained in the diagnosis of dementia. Moreover, the overburdened state health care system leaves doctors with only a few minutes with each patient, preventing them from carrying out proper diagnostic tests.

“Early diagnosis of dementia can be such a good thing, and it’s sad to see so much misdiagnosis or treatment of some of the symptoms of dementia rather than the underlying cause,” he says.

Added to this lack of awareness is the social stigma attached to dementia in the country.

Tamitegama’s wife, Lorraine Tamitegama, directs the operational and fundraising activities of Lanka Alzheimer’s Foundation and is actively involved in providing support to families. Having cared for her own father who suffered from dementia for several years, she says she can easily empathize with the families and relate to their needs.

“There is a lot of stigma attached to dementia in Sri Lanka,” she says. “So the families are often in denial. There is no acceptance.”

She says that caring for a patient with dementia is expensive.

“The other challenge faced by families is economical,” she says. “It’s very expensive to provide some of the care that a person needs, whether it is to hire someone to be with the person while you’re away, buy adult diapers and provide the recreational activities they need.”

Her husband agrees.

“Poverty and dementia make terrible bedfellows,” he says.

Also, the belief in karma in Sri Lanka creates a placid acceptance of dementia as something a person deserves because of actions in his or her past life, the foundation members say. Dementia is one of many social issues that people do not openly talk about in Sri Lanka, resulting in ignorance, misconception and social stigma.

As a result, Sri Lanka is not prepared for the challenge of age-related dementia, they say. The responsibility to take care of elderly relatives is a deeply ingrained social concept in Sri Lanka, yet the health field and the government have not developed information, care and support to address health issues of the elderly.

Ministry of Health officials did not respond to numerous interview requests regarding strategies to address the rising epidemic of dementia.

The Lanka Alzheimer’s Foundation is working to lead the way in raising awareness and offering care.

Tamitegama says she spends much of her time talking with families and caregivers, striving to support them with practical advice and emotional empathy.

Marçal-Grilo works with the patients and families who access the services at the foundation’s service center. He also trains the group of volunteers who work with the patients.

At the weekly social day at the center, a small group of people with dementia can meet, socialize, engage in various activities and share a meal. The foundation also organizes monthly support group meetings for families of people with dementia. Volunteers visit the homes of patients, too. 

Ameen says that she takes her father to the weekly social day offered by the foundation’s center in Colombo so that he can interact with other people who have related disorders. She says that she too has learned how to cope with some of the more challenging and difficult aspects of caring for a person with dementia.

The foundation is also working to raise awareness about dementia through public programs, school visits, lectures and presentations at various events. It is also focusing equal attention on preventative measures: active lifestyles, healthy diets and exercises to maintain mental alertness.

But the foundation’s free services are currently limited by funding shortages, the Tamitegamas say. Many thousands of families are not able to access their services, and other organizations specifically dedicated to dementia are rare in this island nation.

Still, the foundation strives to stretch its funds to expand its efforts to other parts of the country and to offer a wider range of services.

“We are planning to start a program where we will visit homes and talk to people about dementia and Alzheimer’s,” Marçal-Grilo says. “Often, old people with dementia are hidden away, and this is one way to find them. Because our resources are limited, we will start small­­­­ in the area where our service center is located, and we hope to expand it wider.”