A voluntary organisation aims to provide free of cost guidance and training for Alzheimer’s patients and caregivers
When Mian Abdul Basit, general secretary of the Alzheimer’s Pakistan Rawalpindi Chapter, received reports of an old man’s screams heard by neighbours in the small town of Fateh Jang, he decided to visit the place himself.
After some tense negotiation with the family, he got permission to meet the person he suspected was an Alzheimer’s patient. What he found was a man in his seventies, locked up in a dark dingy room filled with the smoke of dhooni and several types of ta’aweez (charms) hanging on the walls – a treatment prescribed by a Peer sahib. The patient was suffering from extreme malnutrition and aggression.
The family believed that the old man was under some kind of spell; he could not recognise his relatives, had started hallucinating and was aggressive. It took a lot of effort to convince the family that he was an Alzheimer’s patient.
This was not the first such case Abdul Basit had dealt with. “A majority of Alzheimer’s patients suffer this way. The families, especially those belonging to rural areas or less educated, are usually clueless about the disease, its symptoms and the special care required for such patients. They are not aware of the fact that there is no cure for the disease.” “But there is treatment available,” he says while speaking to The News on Sunday.
There are around one million Alzheimer’s patients in Pakistan. Globally, more than 10 million people suffer from this disease. Unfortunately, only about 10 percent of the patients get the right diagnosis in developing countries like Pakistan.
“Certain studies suggest that there are more patients of Alzheimer’s in developing countries as compared to developed countries. The reason can be better living conditions, a smaller number of elderly people and better education and health facilities in developed countries,” he says adding that not much research has been done in Pakistan to identify the reasons behind the increasing number of Alzheimer’s patients.
Alzheimer’s Pakistan is a national organisation for Alzheimer’s and related dementias which provides free of cost guidance to patients and their caregivers. “We train family caregivers and young medical professionals and paramedics. We work to enhance care and support services for individuals and their families,” he says. The organisation also arranges activities to increase awareness about Alzheimer’s and related disorders, and works on expanding access to services, information and optimal techniques to improve care and support for individuals and their families.
The organisation doesn’t provide shelter. They believe that the best way to retard Alzheimer’s symptoms is for the affected individuals to be among their family. “In Lahore, Alzheimer’s Pakistan provides daycare where patients can stay for a day and have a wider examination done.” He says that it is equally important to focus on health of caregivers. Taking care of such patients for years can lead to physical and mental issues among caregivers.
How did it begin? Abdul Basit says it started when his father-in-law was diagnosed with the disease. “One day, he went out in his car and forgot the way back. He kept driving the car till there was no more fuel. After that, he started walking until he was spotted by a taxi driver in the morning who brought him back home following what little my father-in-law could remember.”
“My father-in-law survived the disease for seven years but during that time, we realised how important it was to create awareness around the symptoms and care required for such patients.”
After his death, Abdul Basit, a former Pakistan Army officer, used his financial resources to start the initiative in Rawalpindi in 2009, which was later connected to the larger network of Alzheimer’s Pakistan that is part of an international network, the Alzheimer’s Disease International.
To provide guidance to the affected families, Abdul Basit sourced studies on Alzheimer’s from Universities in Chicago and Singapore, and took courses from some Australian universities. “We work under the umbrella of Alzheimer’s Pakistan but our chapter is independent.” The chapter is led by a board of experts, including its president Brig Munawar Ahmed Rana and technical advisors Prof Dr Fareed Aslam Minhas and Brig Dr Mowadat Hussain Rana.
Abdul Basit has also authored a Caregivers’ Guide Book, which is available free of cost. He is in the process of writing another booklet on the prevention of dementia. “Factors that are important for the health of heart are equally important for the health of the brain. These include diet, physical and mental activities, stress control and social activities.”
Instead of creating new mechanisms, he says using existing health structures should be used to create better facilities for Alzheimer’s patients. “Paid shelters like those in developed countries could help,” he says “but a large majority of our population cannot afford that kind of care. We do not recommend putting patients in shelters.”
He suggests training lady health workers in identifying symptoms of this disease and providing guidance to families on special care needed for Alzheimer’s patients. “Providing diagnosis and guidance facilities at basic health units can also prove beneficial,” he adds.
The writer is a reporter at The News in Islamabad