With a little help from my friends
Prasun Sengupta loves going to his daycare centre, 10km from his Park Street home in Calcutta. Monday to Friday, he spends most of his waking hours at the centre happily singing away, just like a little child. But there is a difference — Sen is 80 years old. The former professor of statistics at the University of California, Berkeley, the US, has dementia.
For the last five years, he has been suffering from Alzheimer’s disease. It started with failing memory. Soon, Sengupta, who had lived among numbers, found it difficult to remember even his age, and later couldn’t recall his name. The recurring forgetfulness made him more demanding, making life difficult for his wife, Sipra, who is in her 70s. Two years ago, she came to know about a daycare centre for dementia patients run by the local chapter of Alzheimer’s and Related Disorders Society of India (ARDSI). The centre offers an environment that appreciates his way of communication, which is through singing. Till six months ago, his lyrics were all clear. Now the tune is fine, but his lyrics are jumbled up. His condition has not improved, but the quality of his life has.
“One of the biggest problems in dealing with dementia is the burnout of the caregiver,” says Nilanjana Maulik, who heads the Dementia Daycare Centre in Jadavpur. “Those who suffer from the condition are completely oblivious of this fact,” says Maulik.
The Senguptas are lucky — for most people with Alzheimer’s have no access to such facilities. There are only 10 daycare centres in India where 3.7 million people suffer from the degenerative illness. The number is projected to shoot up to 12.5 million by 2050. Maulik says Calcutta alone has an estimated 46,000 dementia patients, whereas the daycare centre can cater to only 10 people.
“Dementia is emerging as a major problem in India with people living longer,” says Dr K. Jacob Roy, a paediatrician who played a key role in setting up ARDSI in 1992. “The awareness about dementia is very poor here. Most cases go undiagnosed because people take it as a part of the normal ageing process, which is not the case.”
There was a time when Indians were not overly worried about dementia, for it was thought that Westerners suffered more because of food habits. “But recent studies have shown that the prevalence rate is quite similar,” observes Dr Roy. Doctors often pointed out that an active compound called curcumin found in turmeric, which is an integral part of Indian cuisine, had a beneficial effect on Alzheimer’s disease, which accounts for nearly 50 to 75 per cent of dementia cases. But now it transpires that curcumin is hardly digested by the human body and hence offers very little or no protection against diseases such as Alzheimer’s.
Studies from different parts of the country have shown that nearly 3 per cent of people above the age of 60 have dementia in India. According to the first-ever Dementia India Report released last week, about 7.5 per cent of Indian people are above the age of 60. This graying population is expected to grow dramatically in the coming decades, with advances in modern healthcare. “For every five years of age after 65 the risk of developing dementia doubles,” says Dr Roy. “In people above 80, the chance is one in five.”
The social and emotional cost of dementia is high. For every person with dementia, at least four to five others — the patient’s immediate family members — suffer, says Dr Roy. The dementia report estimates that the total societal cost of dementia for India is Rs 45,000-65,000 crore.
But Dr Amit Dias, geriatrician and lecturer at the Goa Medical College, says the government and the medical fraternity are slowly waking up to the situation.
Today there are nearly 100 memory clinics in India, which specialise in better diagnosis of dementia-related illnesses. Because of their restless nature, dementia patients generally find it difficult to visit a general neurology clinic and wait for their turn. This has been a major hindrance in the early diagnosis of the illness, says Dr Dias, who is actively involved in Sangath, a voluntary organisation that also focuses on mental health in Goa. All chapters of ARDSI not only counsel family members on care, but also train professional caregivers who look after dementia patients.
“Unlike in the West, we do not believe in sedating people with antidepressants,” says Premkumar Raja, a founder member of Nightingale Medical Trust (NMT), Bangalore, which has a long history of providing care for the elderly. In April, it set up Nightingale’s Centre for Ageing and Alzheimer’s, which has a 70-bed facility where people can also stay for a long time.
One of the major problems with patients is that they wander off and lose their way. Dr Roy narrates a story of a person belonging to a well-to-do family in Kerala who begged on the streets for six months before he was tracked down and brought back home.
Such incidents could be a thing of the past if a Hyderabad-based technology firm has its way. Vyzin Electronics, founded by Rajendra Sadhu, a non resident Indian who worked in the US for 15 years and returned to India last year, has developed a mobile-based personal emergency response system for dementia patients who get lost. Developed under the brand Vesag (see pic right), the contraption is available in the form of a wristwatch or a pendant that can be worn around the neck. Equipped with a global positioning system, it can easily track down the person, and inform a dedicated call centre, which in turn can alert his or her caregivers or doctors. It is also capable of measuring critical health parameters such as the heart rate, blood pressure, and blood sugar and automatically relay the details to a doctor.
“We find it very useful for early dementia patients,” says Rukhsana Ansari, secretary of ARDSI’s Hyderabad chapter, which is field-testing the device.
Clearly, life for dementia patients — and their relatives — can improve in the near future. Till modern science does away with the degenerative illness altogether, help is at hand.
|MIND MATTERS: Prasun Sengupta at the daycare centre|
What is dementia?
Dementia is a syndrome that can be caused by a number of progressive illnesses that affect memory, thinking, behaviour and the ability to perform everyday activities. Alzheimer’s disease is the most common type of dementia.
Therapies to cope with dementia
No medication today offers a complete cure for dementia. Most dementia cases are caused by both reversible and irreversible conditions. Physical fitness and proper medication for chronic diseases such as blood pressure, cardiovascular diseases and diabetes are capable of correcting many reversible conditions. Besides, drugs are now available to delay the progression of irreversible conditions. Similarly, there are several other alternative therapies with varying degrees of effectiveness.
Reminiscence therapy: This seeks to boost sagging memory by taking people through old photographs or making them recollect important events. A peep into comforting memories of the past promotes an older person’s sense of security.
Music therapy: Music’s non-verbal stimulant qualities make possible some amount of social, emotional and cognitive connection. It soothes symptoms like agitation, aggression and confusion.