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Alzheimer’s patients mistreated due to lack of diagnosis, awareness

Patients with dementia need specail attention and care, say doctors Kamila Hyat/IRIN
It was a neighbour who suggested to Faisel Khan that his aging father could have Alzheimer’s disease. Till then, Khan and his family had believed his father’s bizarre behavior, his lack of ability to recognize his own wife or children, his tendency to wander out of the house and get lost in a neighbourhood he had known for decades, his sudden inability to drive and his mood swings were symptoms of mental ill-health.

“We had no idea what Alzheimer’s was, or that it could be linked to physical changes in the brain,” Khan told IRIN in Lahore, capital of Pakistan’s Punjab province. Getting a diagnosis proved no easy matter, with nearly a dozen doctors visited, including general practitioners (GPs), psychiatrists and neurologists, before Alzheimer’s was identiified.

Professor Shaukat Ali, head of the neurology department at the Jinnah Postgraduate Medical Centre (JPMC) in Karachi, told IRIN: “There is no definite diagnostic test for Alzheimer’s, which is basically a problem of memory loss. Most cases are age-related. An MRI [Magnetic Resonance Imaging] shows general brain atrophy and other changes that can help with a diagnosis. Issues like Vitamin B12 deficiency, hypothyroidism, depression and head injury need to be ruled out.”

Ali said Alzheimer’s was often confused with multiple strokes, which he said were very common in Pakistan.

Though there is no cure for Alzheimer’s, drugs can slow its progression. Those marketed by multinational companies cost around US$100 a month, putting them beyond the reach of many families. Locally manufactured drugs cost $25-37 a month.

A free daycare centre for people with Alzheimer’s in Lahore run by the Alzheimer’s Pakistan NGO
Photo: Kamila Hyat/IRIN
A free daycare centre for people with Alzheimer’s in Lahore
About 26 million Alzheimer’s sufferers

Alzheimer’s accounts for 60 to 70 percent of all cases of dementia (a non-specific set of symptoms for which affected areas of cognition can be memory, attention span, language capability and problem solving) and around 26.6 million people in the world are believed to be living with the disease. Researchers predict global prevalence will quadruple by 2050, as populations age.

The precise number of people with Alzheimer’s in Pakistan is unknown, but Hussain Jafri, secretary of Lahore-based NGO Alzheimer’s Pakistan, estimates their number to be about 1 million. He said many of those cases may never be diagnosed.

Jafri’s own grandfather has suffered Alzheimer’s since 1993 but it was not detected initially, demonstrating how educated families are also capable of mistreating Alzheimer’s sufferers when there is no diagnosis. “My family members thought my grandfather was deliberately being difficult to attract attention. He would pray again and again, scribble on walls and demand food repeatedly. They stopped giving him food and he lost nearly 40 kilograms,” Jafri said.

His organization runs a free daycare centre for people with Alzheimer’s. Sabiha Shahid, the centre’s administrator, told IRIN: “These patients need constant supervision. This is now very hard in homes, especially as the extended family is breaking up and more and more women work. This centre offers a place where patients can be cared for and offered light physical and mental exercise.”

Ali of JPMC said that while the disease is most common among the elderly, with 50 percent of those over 85 affected, it can sometimes strike younger people. Genetics is thought to be responsible in some of these cases.

“The progression is faster when younger people are affected,” said Frank Schaper, CEO of Alzheimer’s International in Western Australia, Australia’s first support group for people with dementia and their carers.

Increase in cases predicted

Jafri said that recent research pointed to a particularly high Alzheimer’s rate in India and China. The reasons are unknown although some findings suggest lifestyle habits – diet, smoking, drinking and so on – could play a part in triggering the disease.

“There is now evidence this unknown factor could be triggering the disease up to 10 years or so before there is any physical evidence,” said Schaper.

Specialists say the number of cases of Alzheimer’s seems likely to increase in Pakistan as people live longer.

“It is important that GPs be made aware of what to look out for. Families usually consult these doctors first and they need to be able to refer patients to specialists so they can receive help,” Shahid said. “There is still a lack of awareness about the disease, even among medical professionals who offer primary care.”

kh/at/ed

This article was produced by IRIN News while it was part of the United Nations Office for the Coordination of Humanitarian Affairs. Please send queries on copyright or liability to the UN. For more information: https://shop.un.org/rights-permissions

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