Alzheimer’s in Pakistan: A growing health challenge hidden by underdiagnosis

By Mushfiq Ahmed

KARACHI, Pakistan (MNTV) — Alzheimer’s disease is placing a growing but largely unmeasured burden on Pakistani families, with the absence of reliable national data making it difficult to determine the true scale of the condition.

The best available estimates indicate that about 374,000 people in Pakistan were living with dementia in 2019, according to Global Burden of Disease estimates cited by neurologist Dr. Sajid Hameed of Aga Khan Hospital in Karachi. The number is projected to rise to approximately 1.35 million by 2050.

However, Hameed cautions that even these figures are likely to underestimate the problem because of widespread underdiagnosis.

There is currently no reliable national registry or population-based estimate specifically for Alzheimer’s disease in Pakistan, making it difficult to establish how many people are affected. Alzheimer’s is the most common cause of dementia and accounts for an estimated 60–70% of dementia cases globally, according to the information provided by Hameed.

The issue is not limited to memory loss. “Alzheimer’s disease is simply a memory disorder” is a common perception, but people living with the condition can experience a much broader range of problems, Hameed said.

As the disease progresses, patients may develop agitation, sleep disturbances, depression, anxiety, psychosis, wandering and other behavioral changes. These symptoms can be particularly difficult for families and caregivers to manage.

Patients can also gradually lose their independence and require assistance with medication, finances, cooking, transportation, personal care and other everyday activities.

For families, the behavioral and psychological changes can sometimes become more difficult to manage than memory impairment itself.

Information from neurologist Mohammad Wasay of Aga Khan University highlights agitation, aggression, depression, apathy, psychosis and hallucinations among the behavioral symptoms that can cause significant distress for families and caregivers.

Wasay’s material also identifies potential triggers for behavioral symptoms, including pain, acute illness, loneliness, boredom, depression and social or environmental stress.

The progressive nature of Alzheimer’s also creates a major caregiving challenge.

Hameed said patients may be unaware of their own memory or behavioral problems, increasing the pressure on caregivers. Over time, this can lead to considerable stress and burnout.

“Caregivers are central to dementia care in Pakistan,” Hameed said, while emphasizing that caregiving should not mean families have to manage the condition entirely on their own.

He called for greater access to healthcare professionals, nursing services, appropriate medicines, dementia-related education and other support.

Delayed diagnosis is another major challenge. Dementia symptoms may be considered a normal part of aging or attributed to psychiatric illness or other causes, Hameed said. Such perceptions can delay medical assessment and diagnosis.

Limited access to specialist services compounds the problem, particularly outside major urban centres, while the costs of medicines, investigations, nursing care and supportive services can place an additional financial burden on families.

Pakistan therefore needs to move beyond treating dementia primarily as an individual or family issue and recognize it as a public health and social-care priority, Hameed said.

He proposed establishing reliable national epidemiological data on dementia and developing a national dementia strategy.

Public-awareness campaigns in Urdu and regional languages could help reduce stigma and encourage people to seek assessment earlier. Primary-care and family physicians, as well as community health workers, should also receive training in recognizing, diagnosing and managing dementia.

Hameed further called for dementia clinics and memory services to be developed beyond major tertiary hospitals, particularly at the secondary-care level.

Dementia should also be incorporated into existing non-communicable disease and healthy-ageing programmes, while caregivers should receive education, counselling, respite services and access to support groups.

Treatment can help manage Alzheimer’s disease, but it does not reverse the condition. 

The material notes that these medicines can help slow the progression or improve symptoms in appropriate patients, but treatment requires long-term management and consideration of costs and side effects.

Wasay also cautions against unproven therapies and stresses the importance of reviewing patients’ medications because of possible drug interactions.

Managing associated health conditions is also important. His material notes the presence of vascular risk factors in more than 60% of people with Alzheimer’s disease and emphasizes aggressive management of vascular risk factors.

For families, however, medical treatment is only one part of the response. Counselling should address the expected course of the disease, future complications, medication costs and side effects, driving, bank accounts, legal issues and changes in the patient’s environment, according to Wasay’s material.

Hameed says the response to Alzheimer’s disease needs to operate at three levels: early diagnosis and medical care, support for families and caregivers, and prevention through better brain and cardiovascular health.

The broader message for World Alzheimer’s Day is that Alzheimer’s should not be dismissed as an inevitable consequence of growing older. “It is a progressive brain disease that affects cognition, behavior, independence, families, and society,” Hameed said. 

For Pakistan, addressing the condition will require better data, greater public awareness, earlier diagnosis and a healthcare system capable of supporting both people living with Alzheimer’s and the families who care for them.