With the number of elderly people in the country expected to be 9 crore in the Census 2011 report, the government has to recognise that diseases of the elderly is going to be a very important public health problem in India, said Dr. K. Jacob Roy, who was recently elected chairman of Alzheimer's Disease International (ADI)l.

In an exclusive interview with Shyama Rajagopal, Dr. Roy, who founded the Alzheimer's and Related Disorders Society of India (ARDSI), spoke about conditions of the elderly in the country and specifically about Alzheimer's disease, a complex and frightening disease that is affecting a lot of elderly. He will take on the mantle of ADI chairman for three years in 2012 at the organisation's London meeting.

What is this public health problem?

In 20 years, the number of elderly is going to double which would make India the country with the largest number of elderly in the world.

In that context, the medical problems of a large group would create a public health problem in the country. Since age is the single most risk factor of the disease, and when we have segment of people over 80 growing because of better health care and nutrition, conditions like Alzheimer's will also be on the rise.

What is the extent of the disease?

The prevalence of the disease [in India] is said to be one in 20 for people over 60 years, and one in 5 for people over 80 years. There are about 3.7 crore people affected by the disease, and the cost of treating the disease is pegged at Rs. 14,700 crore.

This is going to treble in the next 20 years as the number of affected is going to double and become 7.6 crore.

So unless we plan now there is going to be a catastrophe. Families are becoming nuclear… and if someone in our family gets dementia, who's going to take care of the person?

How is ARDSI tackling this problem?

ARDSI has come out with a Dementia India report last year — an effort of two years by experts.

When we have to convince the medical community, you need to have scientific data. The developed countries were using their country-specific report to make the Government device policies for supporting the elderly.

It is a scientific authoritative report on dementia and it contains all the statistics you need, like what the disease is all about, the number of people affected, types of dementia, cost of care per person and many more.

This report will be used to influence the Governments, both the Centre and State to recognize dementia as a health priority and include it in the national agenda. If any significant change has to happen, the Government has to accept it and make it a health priority. As the national chairman of ARDSI, the campaign is for the support.

What are the measures adopted in creating facilities for Alzheimer's disease patients?

The facilities that ARDSI is providing in taking care of patients with dementia are on par with what is happening elsewhere in the developed world.

Because we are a developing country, we should not dilute standards. Ideas were taken from the West, but are implemented taking care of our cultural ethos. So far 14 chapters of ARDSI have been started across India. Ten new places have also been identified. We have already started one in Pune. Nagpur, Varanasi, Lucknow, Manipur and Srinagar are among those we will be starting soon. We are going to raise this issue in Parliament and to get Ministry of Health and Social Welfare to fund the programmes.

We need to provide more services for which Governmental support and recognition is necessary. Help to set up memory clinics in all districts, to improve diagnosis, more services like day care, home care, 24-hour residential care, information centre, training programme for doctors and more research programmes are the kind of things for which we want support from the Government.

What kind of work does ADI do?

ADI is not a medical organization, but it has individuals from medical fraternity as well as social organisations. It is an umbrella organisation for societies formed by care givers of patients. I have been part of the ADI for a long time as it was a personal experience of my father being affected by it that led me to search for what could be done.

As the chairman, the agenda will be to extend the reach of ADI where there is hardly anything happening like in Asian and African countries. The first step will be to engage world governments to recognise dementia and to encourage societies to bring out country-specific reports.

What kind of work has ARDSI done?

We started the first ARDSI chapter in Kerala as a result of the Kochi conference in 1998, the first such meeting of ADI that was held outside a developed country. It resulted in forming a group dedicated to research — primarily to developing research and epidemiological studies where hardly any work was done. ADI helped improve the scenario in research in the country from where very little data was coming in.

It also led to the formation of the Asia-specific regional group of ADI and India was the first to join in. I had been associated with ADI as the vice chairman and was also working in the elected board of ADI. The headquarters of ARDSI was shifted from Kunnamkulam (where I'm working in a hospital) in Kerala to New Delhi for better interaction with the governments.

Though awareness programmes on dementia were on for a long time, don't you think films based on the issue helped in reaching out to more people?

The impact of a commercially successful film can never be matched. Obviously it had a profound impact. One Thanmatra (in Malayalam) and one Black (Hindi) is not sufficient.

One needs to continue the efforts. More films and more activities are required to reach out to the people. [Movies should convey] information about what needs to be done for the people affected with dementia, guidelines for caregivers, what should be done and what should not be done.

There should be a change in attitude towards handling the patient.

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