Rajyalakshmi (76) lies on a bed, her eyes open but vacant and expressionless. She seems unaware of our presence and of the world around her. Rajyalakshmi has Alzheimer’s, the mind-erasing disease. Her family is losing her — day by day, little by little.
Beside her bed stands her daughter Annapurna. A friend, who has septuagenarian in-laws, asks Annapurna about the “burden of being a caregiver”. A mistake! Annapurna does not like the word ‘burden’. “How can you use that word?” she remonstrates. “My mother did so much for me from the time I was born. Before that, she bore the ‘burden’ of my life for nine months. This is the least I can do in return.” She pauses and, eyes misting over, adds, “But as she cared for us, she had the joy of seeing us grow. We have the anguish of watching her sink.... deeper every day.”
“It is a relentlessly progressive disorder,” says Dr. Manjari Tripathi, Additional Professor, Department of Neurology, AIIMS, New Delhi. “As of now there is no cure, though research is happening — on a war footing — to find a cure or at least to halt it in its tracks.”
Dr. Jacob Roy, Chairman, Alzheimer’s Disease International, quotes the Dementia India Report 2010 to point out that there are 3.7 million elderly people with dementia in India. Nearly 60 per cent of all dementia is due to Alzheimer’s. The figure is expected to double by 2030, he adds.
Often undiagnosed
It might sound ironic but Rajyalakshmi is fortunate; she has educated, loving, well-off children. She has a trained nurse to care for her and regular visits from a specialist. Unfortunately, most Alzheimer’s patients lack all this.
One reason is that the cases are often undiagnosed. There is very little awareness about dementia in India. Many families have no idea about what is happening to their loved one. Doctors say that cases of memory failure and behaviour problems are often attributed not to dementia but a normal ageing process.
Dementia is not part of ageing and is caused by a variety of diseases. Dr. Mathew Varghese, Professor of Psychiatry, NIMHANS, Bangalore, explains that ageing is, however, a risk factor. So, increased longevity means a greater proportion of old people in a country; this, in turn, means more people with dementia. The consequences of lack of recognition are unfortunate. Dr Manjari points out that there is a golden period for intervention. If recognition happens too late, “this has severe consequences for the caregiver and family. Early diagnosis and treatment help the patient maintain their daily life and independence, which helps reduce the caregiver’s burden.”
Lack of facilities
Another problem is the lack of facilities. Dr. Roy says that facilities — for both diagnosis and management — are grossly inadequate in India.” There is an urgent need for the Government to recognise dementia as a health and social-welfare priority, he adds, especially, if you consider the total societal costs — Rs.14,700 crores annually. This will increase as the number of patients increases. In the meanwhile, small steps are being taken to improve the situation. A voluntary organisation — Alzheimer’s and Related Disorders Society of India (ARDSI) — is working to build a dementia-literate and friendly society.
Also, the patient has to be dealt with carefully. “Medication and understanding care help stabilise the course of the disease and delay progression,” explains Dr. Manjari. The caregiver also has a vital role to play. The patient has to be kept mentally active by giving them simple tasks and engaging them with activities and games like puzzles, chess or sudoku, while music-therapy, Memory-Lane and storytelling also help.
Often, as the patient becomes increasingly dependent and helpless, he/she needs constant care. This may require one person from the family to stay at home. Some appoint a surrogate caregiver or paid help but that may not be ideal. The caregiver has to be trained. Many caregivers are often beset by a constant worry: Am I going to be next? Delhi-based homemaker Geeta Rastogi — who has cared for her Alzheimer-ridden father and maternal aunt — is a year away from 68, the age around which her father and aunt began the slide into Alzheimer’s.
Challenge for caregivers
Looking after an Alzheimer’s patient is a big challenge, and it takes a toll on the caregiver. This means that day-care centres or chronic-care facilities are necessary to give them a break. Dr Manjari points out: “We need a place where the patient can be left in the care of trained personnel so the caregiver can pursue her/his work without worry and take the patient home later in the day. Something like leaving kids in a crèche or day-care centre.”
A family that is sensitive, compassionate and emotionally sound is a great help in the management of Alzheimer’s disease, say experts. But there have been cases where Alzheimer’s patients have been consigned to old-age homes. The breakdown of the joint family has meant that traditional support for the elderly is crumbling. Mumbai-based businessman Rajesh Sinha (name changed) has placed his Alzheimer’s-affected mother in an old-age home. He says nonchalantly: “A parent who is both old and suffering memory-loss is a double problem… more than my wife and I can handle.”
In Hyderabad, software-engineer D.V. Chandrashekhar looks after his Alzheimer’s-affected father in his own way. “My children, my wife, the part-time nurse and I take turns to talk to him, narrate jokes and play simple games with him. We also play a lot of music — his favourite Carnatic music and chants in his room.” The family knows there is no cure, but want him to have good quality of life as long as he lives. Each one has their own problem but their pain and crises are secondary when they see what he is going through, they say.
We may not be able to give Alzheimer’s’ sufferers a cure. But giving them a life of dignity is necessary and possible.
What is Alzheimer’s disease?
The most common form of dementia, Alzheimer’s is a progressive neurological disease. It affects memory, thinking and behaviour. As it worsens, the patient requires assistance with even simple daily tasks like eating, dressing, bathing and using the bathroom. The disease gets worse with time. And it is incurable. Some symptoms are:
Difficulty recognising people
Finding the right words when talking
Remembering sequences of tasks
Managing money or shopping
Going out alone
Following instructions
Recalling events
