My father once told me to get him a glass of water. On holding the glass, he complained that the water wasn’t hot. After I got him hot water, he complained that it wasn’t sweet. I put some sugar in it and gave it to him. He looked at me, confused, and said that it didn’t taste right. Eventually I understood that he wanted tea,” says Balagopal Keeran, son of MV Krishna Wariar who is suffering from Alzheimer’s disease, the most common type of dementia, for the past 14 years. His declining memory remembers the taste of tea, but has forgotten the name of his favourite beverage.

Wariar, who is settled in Kerala, used to live a punctual and disciplined life. Post retirement, his wife started noticing occasional forgetfulness in him. “Initially, we thought it was an occurrence of old age. However, when he started losing his way to the temple and back home, we realised that the matter was serious,” says Balagopal.

Dementia (which in Latin means ‘out of mind’) is a syndrome wherein patients have difficulties with cognitive functions (the ability to process thought) such as memory, language, reasoning, or recognising people or objects. It can eventually impair the ability to carry out everyday activities such as bathing, driving and performing daily chores.

In the final stage of Alzheimer’s, Wariar has completely lost his memory with thoughts lasting only a few seconds. “He behaves like a small child, who has to be trained at everything. He becomes frustrated because he is aware that something is wrong with him but he can’t remember anything,” says Balagopal. 

The probability of suffering from dementia increases with age, often after 65. Millions in India suffer from this syndrome, but unfortunately it hasn’t got due attention. The government has overlooked the syndrome as a cause of concern and hence has very little infrastructure and awareness in place.

According to the ‘Dementia India Report 2010’ of the Alzheimer’s & Related Disorders Society of India (ARDSI), in 2010 there were 3.7 million Indians suffering from dementia and the number is expected to reach 4.16 million by 2026. “Right now there are no government figures on how many people are affected by dementia or are likely to be affected. The only figure that everyone talks about is from the dementia report of ARDSI. But this report is a statistical one. There has been no epidemiological study so far,” says Dr AB Dey, professor and head of department of geriatric medicine, All India Institute  of Medical Sciences (AIIMS).

“A longitudinal ageing study of India (LASI) is expected to be launched soon. It will be funded by the ministry of health and family welfare (MoHFW), ministry of social justice and empowerment and the National Institutes of Health (NIH), USA, and will be conducted by International Institute of Population Sciences (IIPS), Mumbai. That will give us some idea of the actual figure,” he adds.

Infrastructure woes

Aggressive behaviour, either physical or verbal, is common among people with dementia, particularly in the moderate to severe stages of the condition. This can be distressing for the patient and his or her care-taker, family and friends.

Recalling some of his experiences at home, Balagopal says that often when his father saw an LED bulb lit in the house, he assumed there was fire. He used to throw water at it, which was dangerous as he could get an electric shock. Once, while watching TV, he started interacting with the characters and thought they were trapped inside the TV set. So he tried opening the TV set from the back using a screwdriver.

“We got him a trained assistant from a local agency to accompany him during the day. But after a few months, my father forgot who he was and complained to the police that the man was stalking him,” says Balagopal. After many such instances, Balagopal decided to take help of an expert and realised that taking care of him at home was impossible. “I tried finding a good care centre in Delhi, but in vain. I approached a well-known hospital in Karkardooma but saw patients there were kept in sedation and even locked up, like in jails,” says Balagopal. Soon, his father forgot all the languages he knew except Malayalam. “So, Kerala was my only option,” he adds. Now his father is in the ARDSI care centre in Kottapadi.

Dementia day-care centres, which unfortunately are few, can provide supervised and peer group interaction for up to eight hours a day to patients in the early to middle stages of dementia. For patients who are in the last stage or are bedridden, need 24-hour supervision in specialised long-term institutions. There is, however, no infrastructure for training, general practice, speciality care or long-term care institutions for dementia patients, says Dey. “Dementia patients are virtually unmanageable at home. Family members of such patients are so exhausted that my whole aim is reduced to making the patient sleep at night so that family members are not disturbed. But sleeping pills, anti-depressants or anti-anxiety drugs are not a cure. It is important to know that dementia can be a cause of death. People believe that it is a symptom of old age which it is not,” he says.

In order to highlight the difficulty of caregivers, especially spouses of dementia patients, Dey referred to the results of a study led by Johns Hopkins University, Utah State University and Duke University, which says that husbands or wives who care for spouses with dementia are six times more likely to develop dementia than those whose spouses don’t have it. The increased risk was at par with the power of a gene variant known to increase susceptibility to alzheimer’s disease. This reflects the necessity for dementia care centres, need for the welfare of patients as well as relief to caregivers.

Stuck in bureaucracy

Under the National Mental Health Programme (NMHP), the government is implementing the district mental health programme in 232 districts of the country for management of mental disorders, which include treatment for behavioural and psychological symptoms of dementia. However, Nimesh Desai, director, the Delhi-based Institute of Human Behaviour and Allied Sciences (IHBAS), says that the policy does not properly cover dementia care. “There is no arrangement for a full spectrum of services for dementia. The given services are touched upon and left there, without any effort to develop them. In conditions like dementia, treatment falls under two areas, medical and social, and services need to be provided accordingly,” he says.

“In 2008, the ministry of social justice and empowerment started an integrated programme for older persons (IPOP). The scheme provides for assisted living facility like setting up specialised day-care centres covering 20 patients per month. But not much work has been done. The National Policy for Senior Citizens, 2011, is still underway, and hopefully it will come out soon,” says R Narendhar, executive director, ARDSI. The national policy has provisions for special programmes to increase awareness for early detection and care of those with dementia.

Though schemes and policies have been put in place on paper, on ground, they have been caught in the cobweb of bureaucracy. In 2010, MoHFW had launched a national programme for health care of the elderly (NPHCE) at 100 district hospitals. It included setting up research institutes for dementia and alzheimer’s, support to regional geriatric centres and rehabilitation units. “So far, the target has not been achieved. Also, it was announced by the previous government; the present government has no interest in health,” he adds.

Dey says, “While there has been a lot of talk about NMHP and NPHCE for the last five years, the ground level implementation is rather dismal. While there is plenty of allocation by the government, in most years the money goes unspent.” Moreover, there are not enough institutes and courses in the country pertaining to the study and treatment of this syndrome. Narendhar says that the geriatric course is relatively new. Only two government colleges offer specialisation in it; one is AIIMS, Delhi, and another is Kilpauk medical college, Chennai.
Narendhar feels that the situation has worsened as the government is unwilling to take responsibility. “The MoHFW believes that dementia is a rehabilitation issue and that ministry of social justice and empowerment must take it up, while the latter feels it’s a health issue and that MoHFW should handle it. This confusion has majorly affected patients. We need a collective policy where both these domains match,” says Narendhar.

Also, old-age homes, run by local governments, are mushrooming but none of them are dementia-friendly, though most of them house dementia patients – mostly undiagnosed.

A ray of hope

Even with this scenario, there is still some hope in getting aid from the government. Dementia can be diagnosed and treated by psychiatrists, neurologists or geriatricians. General facilities for early diagnosis and management of dementia are available in government institutions like AIIMS, Delhi, Post-Graduate Institute of Medical Education and Research, Chandigarh, and National Institute of Mental Health and Neurosciences (NIMHANS), Bengaluru.

The Delhi government’s IHBAS has a prominent initiative for specialised care for dementia. The neurobehaviour clinic is run every Friday for two hours by a joint team of neurologist, psychiatrist and psychiatric social worker and provides all the services related to dementia care. Dr Suman Kushwaha, associate professor, neurology, IHBAS, says, “We provide the diagnosis, medical treatment, occupational therapy, physiotherapy and neuro-psychological assessment for a patient.” The clinic which started in 2001 has 600-700 registered patients today from all over the country.

One of the patients, Rizwan (name changed), a father of eight, comes to IHBAS every month with his two sons. In the early stages of dementia, he can communicate and do his everyday tasks but cannot recall the number of children he has. A farmer from Meerut, Rizwan remembers his fields but doesn’t remember his wife’s name. When he forgets, he looks helplessly towards his sons, who encourage him to remember. He came to know about IHBAS from a doctor in Meerut. “The doctor told us to come to Delhi for treatment as there was no such facility available nearby,” one of his sons says.

Though these facilities provide the required services, looking at the number of dementia patients in the country, many are left without any support. Limited infrastructure by the government has led to majority of initiatives being taken up by civil society. Several NGOs have stepped in to provide homes and care for dementia patients.

Civil society initiatives

Delhi’s Guru Vishram Vridh Ashram, an old-age home, is like a haven for the most extreme type of dementia patients – the homeless with dementia. The moment one enters the room, an old woman is seen, sitting on the sofa. “They will kill me,” she mutters to herself.  She has no memory and cannot communicate with anyone. She has been in the ashram for the past three years. Shweta, a volunteer, says, “We pick up old homeless people from the road, bus stops and metro stations. We take them in and the doctors at our ashram do various tests to check their physical and mental health.” The ashram has two branches, one in Badarpur, Delhi, and the other in Garhmukteshwar, Uttar Pradesh. While the former has 130 senior citizens, the latter has 110. Of them, 65 percent of patients suffer from dementia.

Funded by corporate and individual donors, the ashram has witnessed many extreme cases of dementia. Last year, a 70-year-old woman was picked up from Kashmere Gate by a volunteer. She stays on the first floor of the ashram and refuses to put on any clothes. “If we try to make her wear clothes, she screams and takes them off. During winters she drapes herself in a thin blanket, but the rest of the time, there are no clothes on her,” says Shweta.

Delhi’s only dementia day-care centre opened in 2011 inside Panchvati, a private old-age home located in Tughlakabad Extension. The centre is staffed and run by ARDSI.

The schedule is the same every day. Soon after 9 am, a taxi leaves the day-care centre and is back with patients in an hour. The number of patients vary from 10-12 each day, though the centre’s capacity is 20. The day unwinds with games, physical exercise, lunch, tea and snacks. The taxi takes patients back to their home in the evening.

“We cannot keep them after 4 pm. All of them develop the sundown syndrome and become agitated to return home after sunset. Some of them start banging on the gates of the centre,” says VK Khanna, head of ARDSI, Delhi chapter. ARDSI does not charge patients. It has been running with the financial support of HelpAge India. “The centre, however, will not be able to run for long as the grant is getting reduced,” Khanna worries.

He adds that after seeing the lackadaisical attitude of both state and central governments towards helping the care centre, he has decided to never approach them again, even if it would lead to closure. “MoHFW in 2009 was giving us a central government health scheme (CGHS) clinic in Sriniwaspuri for which they spent '15-17 lakh on renovation. But later they lost interest,” he says.

The only help that the centre gets from the government is through its tie-up with the National Brain Research Centre (NBRC). “We send our patients there for MRI, which is done free of cost. They also pick up the patients from their homes, conduct the MRI, provide them lunch and then drop them back to their homes,” says Khanna. ARDSI has also linked its patients with AIIMS and Ram Manohar Lohia Hospital, where patients can immediately meet doctors without waiting in long queues.

ARDSI actively runs nine day-care centres in the country and three full-time centres in Kerala, and provides caregiver and volunteer training at its 24 chapters in the country, without the government’s support it has not been able to expand its services.

ankita@governancenow.com

(The story appears in the April 16-30, 2016 issue)