On World Alzheimer's Day, Dr. PK Sethi, a renowned Neurologist discusses the rise of Alzheimer's disease incidence in India, patient vulnerability and the need for holistic care of Alzheimer's patients.

People from Uttar Pradesh call it 'sathiya gaya hai' (for people who have crossed 60 years of age) while those belonging to Punjab say 'bahatariya gaya hai' (referring to people who have reached 72 years of age). Even the Indian medical fraternity until very recently thought of the behaviour of old people (often corresponding to Alzheimer's symptoms) to be signs of senility. Only off late, these strange behavioural traits of the elderly in our family, society, like forgetfulness, suspicion, overexcitement, or depression have been considered as the symptoms of Alzheimer's disease.

Disease incidence in India

Alzheimer's is a neurodegenerative disease, or if put in simple words it means, the gradual fall in neurons that is responsible for memory, intelligence, etc., in human beings. Alzheimer's is a common form of dementia affecting over three million lives in India.

Most Alzheimer’s patients do not recognise the disease on time, which makes the situation even more grave for the patient. People in India are still unaware. They take the patient for medication only when some drastic deviation is noticed in their routine affairs.

Symptoms & Investigation

Common symptoms include forgetfulness, suspicion, over excitement, or depression or in other words, it’s a disease that affects an individual’s ability to perform the regular tasks of life. The diseased person might forget to dress, to swallow food and even fail to recognise their near and dear ones.

One particular case study that comes to mind is of my patient, an 85-year old man. His wife was 75, and she was responsible for everything right from dressing him to feeding, so she had to take the aid of her domestic help. But, instead of appreciating her efforts, my patient suspected his wife of having an affair with the help.

The burden on the caretaker of such patients is not merely physical, but more importantly, emotional. They struggle every minute, not only in taking care of the patient, but also living with the agony that the person for whom they are having sleepless nights is gradually slipping away from them. Earlier, it was said that people in the Western countries were more susceptible to this disease, but with growing life expectancy in India the disease is taking its toll on the people here too.

Investigations may include an MRI of the brain, EEG, and blood tests specially for vitamin B12 & thyroid hormone. Wherever suspected, a full panel of test of auto immune diseases should be asked for. Screening for HIV and toxicology should also be done.

Preventive measures to suggest to patients

As such there is no cure for the disease, but it is curable to an extent, which can help make people behave better. Pondering on the big question, is there any way people can avoid the disease? There are psychological and social perspectives to this, but, chiefly, there are at least three ways to beat the disease.

1. To keep the brain occupied with constructive work, after the so-called retirement age. The mind can be kept engaged by indulging in social activity.
2. To have physical activity that includes walks, routine exercise, and yoga.
3. To have a good self-image, otherwise the patient might suffer from depression and isolation. In that context, the role of family members becomes very crucial.

Efforts to be undertaken for the future

It has been estimated that the number of people above 60 would rise to 137 million as against 76 million at present. The disease might assume alarming proportions if the government does not give due attention. As World Alzheimer's day is celebrated on September 21, its high time that people should be made aware of the disease.

Family support is crucial for Alzheimer’s, which up until recently in Indian society was possible due to the wide existence joint family systems. There was enough support for patients who could depend on family members for their daily needs. When such a system was prevalent, patients were brought to doctors, neurologists specifically only when patients became aggressive, abusive, and unmanageable. By this time most patients already had Alzheimer’s that had progressed too far.

Now, as the joint family system is breaking down, though earlier detection is possible, it is becoming difficult for families to look after Alzheimer’s patients. The responsibility of everyday care usually falls on the spouse of the patient. Some of these caregivers in fact have expressed the need for day-care facilities for such patients. Unfortunately, there is dearth of such facilities in India.

Government and multinational companies (MNCs) need to step in to encourage the set up of such centres. Further, it is needed that such centres become properly licenced and be periodically examined to ensure that they are well managed. MNCs can help in these ventures by funding and establishing centres as a part of social corporate responsibility.

There is also a dearth of trained and reliable people who can be hired to look after Alzheimer’s patients. There is a need for agencies who are certified to provide medically trained nurses or aides to look after patients. Every year, a large number of young people are compulsory retired from the Medical corps and trained as nursing and ambulance assistants. They can be recruited by MNCs /NGOs for such jobs. After a suitable 4-6-week training period on how to work in a civilian set up, they can be hired for such jobs. This will be of great help to dementia patients and a great help to ex-soldiers to be settled after retirement from army at an early age.

Dementia patients need to be looked after and cared for so that they can spend their grey years with dignity and self-respect. In fact, Alzheimer’s is unlike any other disease. It is important to not only look after the patients but also look after the caregivers.

Disclaimer- The views and opinions expressed in this article are those of the author's and do not necessarily reflect the official policy or position of M3 India.