Decoding dementia: 4.1 million patients in India, only 20 care centres

In the first of a four-part series on dementia, we focus on lack of care facilities available to the elderly population suffering from the ailment. Experts say despite the rising number of dementia patients, there is a lack of awareness about the condition and management among public as well as healthcare professionals

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It’s 3am, and Seeta Chidambaram is crying inconsolably. “Everyone is ignoring me. You all will leave me,” the 87-year-old tells her daughter, Vijayalakshmi Mani. The family says this happens often.

“My mother suffers from dementia. There are days she cries uncontrollably, and there are days when she does not talk. There are times she repeatedly says one thing over and over again. She has difficulty in hearing and her memory is failing,” said Vijaylakshmi, adding, “She has been suffering like this for the last one year. Initially we thought her behaviour is changing due to old age. It’s only recently that we started noticing that she finds it difficult to recognise objects of daily use. We have been trying to find a care centre for her, but have failed.”

Seeta is one of the many people in India who suffer from dementia, and the situation of her family is not unique. According to Nilanjana Maulik, National Coordinator, Secretary and Director of Dementia Services at ARDSI, Kolkata, India has only 13 day care and seven residential care centres for dementia.

Around a month ago, Dignity Foundation Centre, a centre that was specially started as a day-care for dementia, had to be shut down. Ironically, the reason for the centre shutting down has been attributed to lack of awareness by the founders of the organisation.

“In Mumbai alone, around 40,000 people suffer from dementia. Our centre at Byculla had to be closed down because very few patients were willing to visit daily. We even arranged for vehicles to pick them and up and drop them. The main reason this is lack of awareness about the need to rehabilitate people suffering from dementia,” said Dr Sheilu Sreenivasan, founder president of Dignity Foundation and Dignity Lifestyle Retirement Township.

Dr Sreenivasan added that lack of awareness meant steep lacunae in understanding that dementia can become unmanageable, and that it needs professional care.

Dementia can be described as a set of cognitive impairment, which involves verbal memory and behavioural changes. While dementia cannot be cured, its progression can be slowed down with professional help and care,” said Dr Sangeeta Ravat, professor and head of neurology, KEM Hospital.

It is ironic that while at one hand the patients’ families struggle to find care centres, the care centres are shutting down for lack of patients. “In India, 4.1 million people suffer with dementia and this number is set to double by 2030,” pointed a study by Alzheimer’s and Related Disorders Society of India (ARDSI). ARDSI is a voluntary organisation that helps manage Alzheimer’s and Dementia. Despite the rising numbers, finding a centre to treat or house dementia patients is quite a task, said experts.

“The growing number of patients suggests not only developing care centres, but the need for a national plan to tackle the situation. The need of the hour is to raise awareness among the public and healthcare professionals. They need to be made aware of the warning signs, managing the condition and the need to seek professional help,” said Maulik.

Apart from a larger plan and governmental intervention, mental health experts said there is a lack of skilled carers who can manage people suffering from dementia. Dr Parul Tank, consultant psychiatrist at Asian Heart Institute and head of psychiatry department, Rajawadi Hospital, said, “There are two main reasons behind these dementia centres shutting down across the country. The first being dementia affects the non-productive population. This means the care centres for them have to be aided. Secondly, lack of manpower another major problem. There are few skilled carers for dementia. Awareness has to be raised at several levels to ensure these patients can lead a life with dignity,” she said.

In this scenario, all Vijayalakshmi and her family can do for Seeta is to provide her care at home. “We looked high and low to find a centre for my mother where we could all get some help, but it has been in vain. It took us two months to understand how we could care for her at home. We have appointed two full-time nurses and ayahs to take care of her; medicines and other expenses included, we spend around Rs90,000 a month for her care. Given the situation, this is the best we could do,” she said.

What is dementia?

Dementia, which largely affects the elderly, is associated with memory loss and difficulty of cognitive thinking which may lead to many behavioural changes. It can be simply explained as, ‘deterioration of immediate memory, in the beginning which may, as time progresses affect daily functions’.

Symptoms may include:

  • Memory loss
  • Difficulty in finding the right words or understanding what people are saying
  • Difficulty in performing routine tasks
  • Personality and mood changes
  • CEDRIC DSOUZA

    Awesome article Ms Aishwarya…Very informative

  • Omkar Kulkarni

    It is very essential for a developing country like India, to diversify, it’s budget for the improvements, in it’s healthcare! Such articles makes us realise, why are we still in a developing state as a country!