Call for Alzheimer's Support Group
22 September 2008
By Chitra Nair
Stumbling in the Dark
The world marked Alzheimer’s Day on Sunday, but a woeful lack of awareness and government funding impede the treatment of the disease in the city
As the world observed Alzheimer’s Day on Sunday, and as we struggle to find out more about the disease, lack of awareness in the country continues to be a major hurdle to its treatment. Alzheimer’s is a progressive degenerative disorder in which the nerve cells of the brain are destroyed and the brain substance decreases. It was first discovered and described by German neurologist Alois Alzheimer in 1906.
“Today, we can regard Alzheimer’s as the most common form of dementia (disorder of the mental processes) that has no cure. Unlike other forms of dementia like multiinfarct dementia, Alzheimer’s is a disease in which the patient’s condition only worsens. On the other hand, multi–infarct dementia is a step and ladder disease in which the patient’s condition gets worse one day and better the next,” says psychiatrist Biswaroop Dey.
Dey runs a rehabilitation clinic for dementia patients in the city. According to him, between 1 to 2 per cent of the city’s population suffers from Alzheimer’s, but a majority of the cases go unreported. “There are two main reasons for this, a lack of awareness and a general refusal to accept that you or someone in your family might be suffering from the disease,” says Dey. It is also important for family members to be able to recognise symptoms of Alzheimer’s.
The cost of treatment also deters people from seeking medical help. “The daily cost of medicines can be as much as Rs 50 and above. What makes the situation worse is the that there is no government help for these patients and neither is there any insurance,” he says.
Dey also tries to dispel various misconceptions regarding the disease, the primary one being that it affects only the elderly. “While it normally afflicts those over 60, today, even 30–year–olds are being affected by it,” says Dey. There are many reasons for this. While a family history of mental illnesses is one of them, pollution, a bad lifestyle, food habits and the degeneration of the joint family, are also indirect causes. Interestingly, urban areas of the country have higher incidence of the disease.
“A recent study by a joint team from Indian and American organisations conducted by the Jaipur University on Alzheimer’s in South East Asia found that while rural north India had the least incidence (only 1 percent of cases), Chennai accounted for 2.7 per cent cases,” says Dey.
Prompt consultation can help doctors in helping patients. “Alzheimer’s cannot be treated and once diagnosed with it, the patient has only 4 to 10 years of life. But with prompt treatment, this can be prolonged to upto 12 – 15 years,” says Dey.
Dey lists increased funding for the department of mental health as an urgent need. “Besides, if the government helps medical professionals, we will be able to improve facilities and also start more rehabilitation homes. In my own case, funding for the rehabilitation clinic is still an issue. What helps is that I have a pharmaceutical company financing me,” he says.
Dey reiterates that raising public awareness about the diseases is of utmost importance. There are around 150 psychiatrists handling Alzheimer’s patients in the city, says Dey. “But if people are hesitant to approach them for treatment, what can be done?” he questions.
Identifying the symptoms
- Loss of memory, especially of recent events or information.
- Difficulty in speaking and writing or performing usual tasks.
- Disorientation related to time and place.
- Behavioural abnormality.
Pune does not have a self–help or support group for people suffering from Alzheimer’s. Yashoda Wakankar, the secretary of SETU – the Association of Self–Help Groups, appeals to caregivers and relatives of patients of Alzheimer’s to come together so that the association can help them start a self–help group. “Our association aims to help selfhelp groups solve their problems. We assist them in setting guidelines and also hold counselling courses for team leaders,” she says. Caregivers and relatives can get together to share problems, help each other, and, importantly, create awareness about the disease. Wakankar can be contacted on +91 9822008035.
The Alzheimer’s and Related Disorders Society of India has its Mumbai chapter at the J.J. Hospital. The society’s helpline number is +91 22 23513253.
Only older people can get Alzheimer’s In fact, people as young as 30 can be affected. It all depends on your lifestyle
Alzheimer’s is not fatal Alzheimer’s is a disease in which the brain cells slowly die.