It’s like looking at someone you know. You recognize them, you know who they are, yet they no longer exist in the way you remember. This is what dementia feels like for caretakers, friends, and family. It leaves behind a hollow human being, stripped of memories, emotions, and feelings. They don’t know who you are, yet they remain in your life as if nothing has changed.

When I was young, my grandmother showed similar symptoms, but she was never properly diagnosed. At times, doctors spoke of blood clots; at others, they dismissed it as simple forgetfulness. She was left without answers, without treatment. She suffered silently, and so did her daughter, who was forced to cope with someone who had lost all control of her mind.

Two years ago, I began noticing changes in my mother. She struggled to keep up with conversations. She couldn’t sleep, paced restlessly, and forgot if she had eaten. It took months to secure a neurologist’s appointment. From the first signs in June to the confirmed diagnosis in October, the disease had already begun to take her away. By the time her medication started, Ammi no longer remembered me.

Looking back, there were early signs we overlooked: clumsiness, falls, urinary incontinence. At the time, they seemed like the quirks of aging. But dementia is a disorder of the brain, and it had been unfolding for years before we realized. Dementia is not just about forgetfulness. It is a progressive condition that affects memory, reasoning, and the ability to perform daily tasks. There are good days when they are lucid, understanding every word you say and recognizing you. But then there are days when they relive the worst memories of their childhood, crying in front of you like a child, and you have no idea how to console them. As the primary caregiver, I learned more about my mother’s tumultuous past than she had ever shared with us, her children, or even with her husband. The heartbreak and sadness were evident, yet her eyes would still shine brightly at the mention of the love of her life, our father, and her favorite child, our youngest sibling.

Repetition is another cruel marker of the disease. Studies suggest that nearly one-third of patients repeatedly ask, “When will we go home?” even while sitting in the homes they’ve lived in for decades. You answer a hundred times, invent excuses, yet the anxiety never eases. Aggression, too, is common, but it is rarely intentional. It stems from confusion, fear, unmet needs, or overstimulation. For families, the emotional toll is immense. The fading of a loved one’s identity is devastating, and the lack of awareness means caregivers are often left without support. It feels like you are never doing enough, yet the only thing you truly can do is to comfort them and give them dignity.

Globally, the World Health Organization (WHO) estimates that as of 2021, more than 57 million people live with dementia, with nearly 10 million new cases every year. Dementia is now one of the leading causes of disability and dependency among older people worldwide. By 2030, the number of people living with dementia is projected to rise to 78 million, and by 2050, it could exceed 139 million. This rapid increase makes dementia not only a personal and family tragedy but also a public health challenge that requires urgent attention.

In Pakistan, the situation is equally concerning but receives far less attention. According to statistics from the Alzheimer’s Pakistan Foundation (2022), more than 200,000 people are currently living with dementia, yet the actual number is likely much higher due to widespread underreporting, misdiagnosis, and the absence of a national dementia registry. Limited awareness, scarce specialized services, and a lack of trained professionals further compound the challenges for patients and their families. Most families mistake early symptoms for “normal aging” and rarely seek medical help until the condition has advanced. With a rapidly aging population, experts predict that Pakistan could see a three- to four-fold increase in dementia cases by 2050, placing enormous pressure on families who already bear the brunt of caregiving without state or institutional support. Despite this, there are very few specialized memory clinics, trained professionals, or community support systems available in the country, leaving caregivers isolated and overwhelmed.

Early diagnosis can change the course of care. While there is no cure, timely medical management, emotional support, and lifestyle adjustments can improve quality of life. I’ve seen my mother find calm in music, in drives where the world moves outside her window, and in the company of children whose laughter breaks through her fog. These small joys are what keep her anchored.

Physically, she is mostly wheelchair-bound. Yet sometimes she surprises us, suddenly trying to get up, to “escape,” as if her spirit refuses to be confined. These moments remind us that, beneath the illness, fragments of her willpower remain.

Engagement, both mental and physical, is vital. Gentle exercise, physiotherapy, music, reading, or simply sharing time with loved ones preserve dignity and keep the connection to life alive. Dementia not only affects individuals; it reshapes families. By speaking about it openly, we break the silence and foster empathy. Greater awareness can ensure that no one has to endure this journey alone.

And perhaps this is where poetry captures what words often fail to. In trying to describe the erasure of memory, the silence of once-vivid lives, I turn to Faiz:

“Yaad ki kasak bhi dil se mit gayi Faiz,
Ab na woh khwab hain, na woh kahaniyan”

Even the ache of memory has vanished from the heart. Now neither those dreams remain, nor those tales.