Fighting mind games

A recent study has revealed that India will have seven million senior citizens with dementia in another two decades. To address this issue, we need over Rs 14,000 crore, and a government that takes training of care givers and development of memory clinics and day care centres more seriously. Question is, will we able to help our elders in time?

Alice Rodrigues is in wonderland. She stands before a curio that has been in her two-bedroom Marol flat for decades, and looks at it with curiosity. Then, as one part comes undone, she laughs at her clumsiness and fits it back. That piece has been broken for months, but 73 year-old Rodrigues doesn't remember so. For the past 10 years, she has been suffering from Alzheimer's, the most common cause for dementia globally. This incurable and degenerative illness was first described by German psychiatrist and neuropathologist Alois Alzheimer in 1906, and named after him.

People don't understand what happens in Alzheimer's. When Alice gets
angry about something, she'll forget about it within a few minutes. The
important thing is to let her be.

� David Rodrigues and Alice have been married for 47 years. Ten years
ago, Alice was diagnosed with Alzheimer's.

Today, she is in excellent physical health, thanks to David's care. 
pic/ Rane Ashish

Rodrigues is one among the 3.7 million Indians over 60 years of age, who have dementia. And, according to a report released this month by the Alzheimer's and Related Disorders Society of India (ARDSI), India will house one of the world's largest populations of dementia-affected senior citizens in the next two decades.

The National Dementia Report 2010, which maps the prevalence, projected growth and social and economic impact of dementia in the country, has some startling findings.

By 2030, the number of persons suffering from dementia in India will double. That's more than seven million elderly persons spread across urban, semi-urban and rural centres, most of which, at present, have inadequate infrastructure for existing patients. To bring it up to par, the report points out that the government would need to allocate a minimum of Rs 14,300 crore to spread awareness through workshops, hold training sessions for doctors, nurses, and paramedical staff on dealing with patients of dementia, and create well-equipped hospitals.

Currently, there are only a handful of hospitals in the city, including government-run Sion and JJ, and privately-owned DY Patil, Holy Family, and Bhakti Vedanta that run memory clinics and detection centres to treat patients with dementia.

ARDSI chairman Dr Jacob Roy, who works in a mission hospital in a small town called Guruvayur near Cochin, is proud of his state, though. "You should see the kind of early detection centres and memory clinics we have in Kerala," says the 59 year-old paediatrician, over the telephone.

These facilities are community-based intervention centres that help families detect Alzheimer's and other dementia-related conditions early and provide assistance to patients to help them stave off symptoms for as long as possible through mental and physical exercises.

"At present, there are barely any government-run clinics or day care centres. Nor has there been any noteworthy spending by the government in the field of dementia," says Roy, whose father suffered from Alzheimer's.

The sub committee on social welfare, set up earlier this year under the aegis of the Central government's Ministry of Social Justice and Empowerment, has recommended that the ministry pump in Rs 120 crore, while the Health ministry put in Rs 150 crore, to train medical practitioners and create facilities, specifically for dementia patients. By the time the ministry's five year plan comes out, the figures may undergo revision. But the larger question to ponder over here is how do the state and central governments plan to bridge the gap between current negligible spending and Rs 14,300 crore -- the amount specified by the report?

Through small, measured steps, says Dr Sanjay Kumavat, director of the government-run Thane Mental Hospital.

A Member Secretary to the State Mental Health Authority, which advises the Department of Health for Maharashtra on its various mental health programmes, Kumavat is particularly upbeat about the way things are moving in dementia care.

"In the past year, there has been a lot of interest in dementia care from the government's end," he says.

Kumavat is referring to the government's 200-bed facility coming up in Aurangabad for the elderly, as well as a training programme that was conducted earlier this month for doctors of the four mental hospitals in the state.

Close to 15 psychiatrists were trained in a three-day awareness raising and sensitisation workshop in Aundh, Pune. Next month, a training workshop for nurses and paramedical staff of government mental health hospitals is scheduled, says Kumavat.

However, even as efforts by the government are underway to offer structured support to Alzheimer's patients --here are privately owned facilities in the city (see handbook) --amilies of patients say their concerns are bigger than early detection.  

Rodrigues' husband, David, is a retired pharmaceutical employee, who has been her caregiver for a decade.

Their children stay abroad, and David has, only recently, hired a help, who he feels is patient with his wife.

"People don't understand what happens in Alzheimer's. When Alice gets angry about something, no matter how small or inconsequential, she'll forget about it within a few minutes. The important thing is to let her be," says the 77 year-old.

The Rodrigueses have been living in the same building for 43 years, and subsequently, have created a strong network of neighbours, and church-going friends. This support system has helped David immensely. "Even the guards of the building across the street know that Alice has Alzheimer's. In case she wanders off on a day I'm not around, they'll guide her home."

Laxmi Rao agrees about the need for a strong support system. Her mother, 78-year old Padmavati, was diagnosed with Alzheimer's two years ago. But coming out to people wasn't easy, admits Rao. 

"The most important thing is for the family to share the burden," says the Goregaon-based social activist.

Padmavati has been staying with Rao for five years. Before that, she was with Rao's older sister.

And while Padmavati still cooks and watches her favourite serials and films, Rao is aware that her mother's condition will progressively worsen. For that, she has started fixing a routine that remains familiar to Padmavati.
For instance, up until a year ago, a certain Hindi entertainment channel would play old film songs from 8 pm to 9 pm every day. When that stopped, Rao started playing DVDs of such songs at the same time.

Care-giving, according to health bodies, is the provision of extraordinary care, exceeding the bounds of what is normative or usual in family relationships. It involves a significant expenditure of time, energy and money over potentially long periods of time, and can be stressful and exhausting.

"We need support groups of caregivers for dementia patients," says Kumavat, citing examples of similar groups that exist for families of patients of schizophrenia.

"Caregivers get burnt out easily, so it's important to educate them about coping strategies," he adds.

David and Rao, and the scores of other care givers in the country could identify with that. While Rao took up a job that allows her to work from home, David rues that he has not been able to watch concerts or go out for excursions as much as he'd like to. And while both are quick to add that they have no complaints, it isn't difficult to detect wistfulness in their voice.

"Luckily, I have a strong family network," says Rao, whose siblings live close by. It also helps that her mother is financially independent, as the cost of medicines can go up to Rs 5,000 a month, depending on dosage.
Rodrigues and Padmavati are lucky. But, for scores of Alzheimer's patients in the country, the situation looks bleak, unless civil society and government get together to tackle the issue head on, to focus on quality of life, rather than the mortality of it.

Watch out for these signs
Recent reports indicate that soon, certain brain scans and eye tests could detect symptoms of Alzheimer's. However, the patients would need to be assessed over several years to find out whether the hi-tech imaging technique, called proton MR spectroscopy, can accurately detect early signs of Alzheimer's.

At present, in India, MRI and CT scans are conducted to ascertain whether a person suffers from dementia. Therapists also have them undergo memory tests.

Family members can watch out for these symptoms before deciding to consult a doctor:
> Memory loss
> Befuddlement and confusion in daily activities
> Depression and sudden loss of interest in social activities
> Decreased or poor judgment

The Forecast

Trend in dementia prevalence by age over time (2010-2050)
Persons with dementia in younger age groups, 60-75 years, are expected to increase steadily over time; and a steep increment amongst age groups over 75 years can be predicted after 2030. The numbers are in millions.

Prevalence of Dementia in India, 2010

The larger proportion of older women than men who have dementia may be due to  the fact that women live longer in India. However, studies of age-specific incidence of dementia among older people show no significant difference for women and men. It may therefore, appear that gender is not a risk factor for AD or other dementia among older people.

Source: the National Dementia Report, 2010

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