Don't forget
Millions of Indians have Alzheimer's disease, but they get little attention
In just one terrible week, my grandmother appeared to have collapsed. For some years her short-term memory had been fading, then the old memories started to go. We had been to a neurologist. He said “Senile dementia,” and prescribed medicines. They may have helped, but by this time it was hard to tell. Lately, and frighteningly fast, my grandmother’s condition had nosedived. One of us had to be with her all the time, holding her hand and reassuring her when she asked a hundred times a day, “What shall I do?” One of us had to help her change her clothes, several times a day. It was unbearable to see her so helpless and terrified. And it was exhausting for us.
It was fortunate that, in the same week, we saw an article about a Delhi startup called Epoch Elder Care. Its founder Kabir Chadha came with his “elder care specialists”, and told us that my grandmother most likely had Alzheimer’s disease. He put us in touch with Dr Sushma Chawla. Chawla runs Hope Ek ASHA, an NGO that specialises in Alzheimer’s. She gave us a brisk and actionable lecture that emphasised daily routine and constant engagement. By this time we had nursing attendants round the clock. And we had retained Epoch, one of whose specialists now visits my grandmother thrice a week to talk, play “games” that exercise the senses and motor skills, listen and sing along to ghazals. Not all of these activities are to my grandmother’s taste, but she is much calmer, better cared-for and more responsive; and it is good for us, her family, to have an outside view of her condition. The cost of all this is formidable: Rs 35,000 a month.
Most families cannot afford to pay so much. But they have to do something, because Alzheimer’s is degenerative. It strikes people above the age of 65, and its prevalence rises with age, so that almost a third of them will have dementia (three quarters of which is Alzheimer’s-related) by their mid-80s. In the West it is one of the costliest diseases to society, but scientists still are not sure what causes it. Medicines, routine and busyness will not cure it but they do slow its progression. The aim of Alzheimer’s care is, therefore, to “focus on making the person happy”, in the laymanlike but accurate terms of Neha Sinha, Epoch’s Alzheimer’s specialist.
| Signs of a slowdown |
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| In end-stage Alzheimer's disease, patients may become bedridden and need help to eat and get out of bed to use the bathroom. They may experience convulsions and seizures and may become incontinent. Courtesy www.alzheimersdelhi.org |
What choices do families have? Very few, so far. Dementia day care centres are scarce but, because they are NGO-run, free or cheap. They can provide, for up to eight hours a day, supervised stimulation and peer group interaction to patients, and relief to their families and caregivers.
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One of Delhi’s two dementia day care centres opened in December 2011 at Panchvati, a private old-age home in Tughlakabad Extension. The centre is staffed and run by the Alzheimer’s & Related Disorders Society of India (ARDSI). A gate in a quiet lane leads to a tiny garden. In a semi-basement opening onto the garden is the day care centre. It is a long room, lacking cross-ventilation but cheerily bright with takhats for sitting or lying on along the sides, comfortable chairs, magazines, books, papers and games, a carrom board, a radio, a TV (turned off), four ARDSI-trained attendants — and, this afternoon, just four patients.
A retired lawyer and a former cipher expert are sitting at the carrom board, not playing but quietly talking. The retired chartered accountant is just getting up, unsteady in one leg but looking ready for his afternoon tea and biscuit. Apparently he was barely able to speak before he came here. Now he speaks short sentences. An attendant, an alert young man, is with him immediately; another sits at the carrom board. The wing commander’s wife is napping, with a young woman attendant seated near her; but then she wakes to reveal bright eyes and a crisp accent. She appears perplexed, even when her favourite keyboard (for the weekly music therapy session) is placed in front of her.
As the company, with attendants, troops out to sit in the garden, ARDSI’s executive director, Col V K Khanna (retd), a diminutive, kind-sounding man whose office is upstairs, says two other patients left earlier, and one “asked for two days’ leave”. He says with a chuckle, “To them, this is like a job, like office. They take it seriously.”
The schedule is simple. Soon after 9 am the taxi leaves the day care centre, with an attendant. By 10.30 it is back with the patients. The catchment area is limited because patients cannot sit in a car for hours. Once they arrive, the day unwinds with prayers, therapeutic games, lunch, a siesta, tea and biscuits. The taxi takes patients home by 4.30 pm. No patient is ever left alone. The attendants are trained, among other things, to deal with incontinence and violent behaviour — also symptoms of Alzheimer’s.
With eight or 10 regular patients, not even this centre’s capacity of 20 is filled. “I’ve been trying to raise this number,” says Khanna. His budget is tight. “We have money for only one transport,” he says — so donations for transport are welcome. ARDSI does not charge patients; the centre costs Rs 28-30 lakh a year, paid by HelpAge India.
In Mumbai, Dignity Foundation runs two dementia day care centres, in Dadar and Chembur. Together they can accommodate 50-55 patients, and 35-40 come — partly because Dignity can marshal more vehicles and has run day care since 2004. It also has a centre each in Chennai and Kolkata. Like ARDSI, it sends volunteers to the homes of those who call its senior citizens helpline. Like ARDSI, its chief handicaps are lack of funding and awareness.
The daily schedule here is much the same as at ARDSI, except for “animal assistance therapy”, says Neha Shah, Dignity’s general manager. Rohini Fernandes of the Animal Angels Foundation brings Buddy, a Labrador, to see the day care patients in Dadar once a week. “You can’t really cure dementia,” says Fernandes, a trained psychiatrist, “but you can reduce its progression if you keep the person engaged.” And Buddy is a big help. A patient who may yell at an attendant “is extra nice to our dog. They don’t feel threatened by the animal.” Nor do they refuse to walk him, or to brush him down — good for motor coordination. Some save biscuits to give Buddy.
He also helps them talk. “A lot of clients when they interact with Buddy they talk about pets they had.” They also talk to each other about Buddy. During the one-hour session, Buddy spends a few minutes with each of the 15 or so patients.
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Asked about long-term institutional care, Shailesh Mishra of ARDSI’s Mumbai chapter says, “There are only six specialised centres in India.” Four are in Kerala, one each in Bangalore and Neral, near Matheran. The last two are “upmarket”, at Rs 15,000-20,000 a month. Rather than long-term care, he says, we need day care centres, because they have the maximum impact. But there are barely 10 day care centres in India. The problems are ignorance and stigma. Many doctors have never heard of the disease.
Most alarming, he offers figures, collated by ARDSI. India had 3.7 million dementia patients in 2010, but life expectancy is rising. From 3.6 per cent of the over-60 in 2010, by 2050 an estimated 14.3 per cent of India’s elderly will suffer from dementia.
Alzheimer’s is set to become an enormous problem very quickly — it already costs the USA some $200 billion a year — and India, from its government to corporations and civil society, has done very little to protect its citizens.