Dementia: A silent epidemic on the verge of explosion

Illustration: TBS

Shahida Begum (not her real name), now in her late 60s, spends most of her days by the window. The memories of the last few decades of her life have become hazy.

When her 22-year-old grandson enters the room, she greets him warmly, believing he is her young son from decades ago. Her confusion deepens when she looks at her actual son — now a middle-aged man — and addresses him as though he were her late husband.

"You see, if my grandma treats me as her son, I don't mind," shared the grandson, who requested anonymity to respect their family's privacy. 

"For my father, though, it's a much harder reality. He loves his mother more than anyone else in the world. But when she mistakes him for her husband, and tries to act accordingly, it overwhelms him emotionally. At times, he struggles to process these moments and feels deeply conflicted," he added.

Despite these challenges, the family has learned to accept their new reality. It was difficult to grasp at first, but now they understand that Shahida Begum has developed Alzheimer's disease, a form of dementia that affects memory and the ability to recognise people or relationships over time.

Shahida Begum's mind is holding on to memories from her younger days. This happens because the parts of her brain that manage memory and time are damaged, making it difficult for her to live in the present. 

Recognising the need for specialised support, the family consulted a neurologist and a geriatric care specialist, who guided them in managing Shahida Begum's condition. 

"We have also created a structured routine at home, ensuring a safe and calm environment, and hired a part-time caregiver to assist her with daily activities," said her grandson.  

Others living with dementia may display a variety of symptoms, such as memory loss, confusion about identities and relationships, difficulty communicating, and disorientation with time and place. 

They may also have impaired judgment, mood swings, personality changes, and trouble with coordination, making tasks like dressing, eating, and walking challenging. In some cases, they may become aggressive or even violent.

Many people, including some psychologists, mistakenly perceive it as a psychological illness, failing to recognise it as a neurodegenerative condition that gradually leads to the deterioration or death of brain cells. This misunderstanding often results in delays in diagnosis and a lack of proper care for those affected.

Additionally, those with dementia may struggle with planning, problem-solving, and misplacing items, while withdrawing from social activities and experiencing eating difficulties, such as trouble swallowing or loss of appetite. 

As the disease advances, they often become more dependent on others for care. In the later stages, dementia can significantly shorten life expectancy, with many individuals passing away within a few years due to complications like infections or malnutrition.

However, not everyone is as fortunate as Shahida Begum when it comes to receiving proper care. Nurun Nabi Millat, Manager and Researcher at the Alzheimer Society of Bangladesh, highlights the lack of awareness about dementia in the country.

Many people, including some psychologists, mistakenly perceive it as a psychological illness, failing to recognise it as a neurodegenerative condition that gradually leads to the deterioration or death of brain cells. This misunderstanding often results in delays in diagnosis and a lack of proper care for those affected.

"As a result, thousands of people in Bangladesh are living with dementia but are not receiving the proper care they need," Millat explained. Even those who do receive care often face neglect, as many families fail to fully understand the condition and eventually begin to view their loved ones as a burden.

This is particularly concerning because a Lancet study published last year estimated that the total number of dementia cases in the country in 2020 could be around 11 lakh, including 2.8 lakh males and 8.3 lakh females. 

The study also projected that the number could increase to 13.7 lakh in 2025 and could be doubled in 2041 (24 lakh), which may increase even further if not intervened effectively. However, the challenge with intervention is that most people are unaware of the true causes of dementia, let alone how to prevent it.

As per the Lancet study, dementia's prevalence stood at 8.0%, or roughly 1 in 12 people, with variations based on age, gender, education, marital status, occupation, and division. Women are twice as likely to develop dementia as men, while individuals over 90 are nine times more at risk than those aged 60-69.

In a recent seminar in November, Dr Halida Hanum Akhter, a Senior Associate at Johns Hopkins Bloomberg School of Public Health, emphasised that women in the country are at a heightened risk of dementia, as both physical and psychological abuse contribute to the development of the condition.

She cited Bangladesh Bureau of Statistics data from 2015, saying 72 percent of women experience domestic violence, and 42 percent of teenage wives face abuse.

Dr Md Mantaka Rahman, a public health researcher at the International Centre for Diarrhoeal Disease Research, Bangladesh (icddr,b), who has studied the causes of dementia, also weighed in on the role of domestic violence, which he described as a phenomenon rooted in power and control.

"Domestic violence causes fear, physical and mental health deterioration, social isolation, financial stress, sleep disorders, and a perceived lack of resources or companionship. 

"Among dementia sufferers, 11%-19% have reported physical or psychological abuse perpetuating a "vicious cycle" of physical or psychological impairment, suicidal behaviors, and cognitive decline. This cycle later on indulges in dementia's hidden darkness," he explained. 

He further added that there is a longitudinal link between early mental health disorders and an elevated risk of dementia and other neurodegenerative diseases in later life. 

"Psychiatric conditions accelerate cognitive decline and psychological stress, with affected individuals having 4.25 times higher risk of developing dementia and a ~5.6 years shorter life expectancy," Dr Rahman said. 

Dr Mohammad Mainuddin Mollah, Associate Professor at the Institute of Social Welfare and Research at Dhaka University, specialising in Gerontology and dementia care, noted that there are also other reasons contributing to women being more prone to dementia in Bangladesh.

To begin with, elderly people are naturally more at risk of dementia, and in Bangladesh, women have a higher life expectancy than men. As a result, women tend to live longer, which increases their likelihood of experiencing age-related cognitive decline and dementia.

"This demographic trend sets the stage for why women, in particular, are more vulnerable to such conditions," Dr Mollah said.

The situation is further compounded by the lack of education. Research shows that individuals who have had more educational opportunities tend to engage in more cognitively stimulating activities throughout their lives, and as a result, they are often better equipped to delay the onset of dementia.

"In Bangladesh, where literacy rates among older women are still lower compared to men, this lack of education becomes a significant disadvantage. Women who have not had access to education are less likely to engage in activities that can keep their brains active and healthy, making them more susceptible to cognitive decline as they age," Dr Mollah explained. 

Another contributing factor is nutrition. Proper nutrition plays a crucial role in brain health, and in many households in Bangladesh, girls are given less care and nutritional support than boys, particularly in rural areas.

"This nutritional disparity, which often continues into adulthood, means that elderly women may suffer from long-term nutritional deficiencies that exacerbate their vulnerability to conditions like dementia."

That said, regardless of gender, aging remains the primary cause of dementia. Therefore, both men and women should receive proper care in their later years to prevent or manage cognitive decline, while also addressing other key factors that contribute to the development of dementia.

Nonetheless, it would also be shortsighted to assume that only elderly people are at risk of dementia. Nurun Nabi Millat cited examples of individuals as young as in their early 40s who developed dementia and later passed away within a few years.

"So, it is high time we gave more attention to dementia. Instead of dismissing it as an issue only affecting the elderly and not taking it seriously, we must prioritise it and raise awareness across all age groups. Otherwise, this silent epidemic will explode in the near future," Millat concluded.