In a showcase full of pictures there is one of Mrs Sukla Bhattacharjya, 76, in which she has a hint of a smile on her face. That isn’t unusual except when you consider that she’s sitting an arm’s length away, unmoving and perhaps asleep, and that her husband and caregiver, Brig (retd.) SP Bhattacharjya, had to watch almost all day to capture that fleeting moment of wakefulness. Sukla, who was diagnosed with Alzheimer’s disease in 1996, hasn’t spoken in four years, is now in the
terminal stages of the disease after a 15-year struggle, and it is for these daily moments when her eyes open that her husband waits.
Mrs Bhattacharjya is one of 3.5 million Indians with dementia, a disorder marked by a steady decline in memory and mental abilities. This figure is set to more than double in the next 20 years. In fact, low or middle income countries (LAMIC) like India will show a proportionately higher rate of increase of dementia cases over the next 40 years than developed countries. By 2050, almost 59 per cent of the world’s 115.4 million dementia-affected people will be in Asia.
New studies also suggest that the rate of prevalence of dementia for people in India over the age of 60 years is now considered to be 5.7 per cent (India’s population of elderly is predicted to be 178 million by 2030), up from the earlier estimate of 3.4 per cent, which is comparable to those in Europe and Australasia. Dementia has the dubious honour of being the leading cause of disability among older people in LAMIC.
So how are we as a country prepared to tackle this looming problem? A three-day conference of the stakeholders-caregivers, doctors, researchers, associations and government-organised by the Alzheimer’s and Related Disorders Society of India (ARDSI), was held in Kolkata from December 4 to 6 as a prelude to a meeting of experts held subsequently in New Delhi, to work on a strategy and to frame a set of guidelines in the form of a policy document on dementia in India.
Earlier this year, the UK came out with a National Dementia Strategy which, as Professor Martin Prince, founder of the 10/66 Dementia Research Group (DRG), a collective of researchers carrying out population-based research into dementia, non-communicable diseases and aging in LAMIC, says, “didn’t come out of a vacuum” and had the benefit of an awareness among policy makers that things “weren’t going quite right” for the elderly. Earlier policy initiatives had revealed the shortfalls in efficacy and they were able to estimate that dementia costs the UK economy 17 billion pounds yearly, and this would triple by 2030.
The Indian government, on the other hand, has no specific policy on dementia, no area-wise figures, cost of the socio-economic burden, or of what works and what doesn’t. Maybe it’s in a state of denial. For a start, three areas of focus were chosen at the conference to work out a strategy: to raise awareness about dementia; to improve diagnosis and treatment; and to provide cost-effective interventions and care.RAISING AWARENESS: “In India the biggest problem is awareness,” says Daisy Acosta, chairman of Alzheimer’s Disease International (ADI). “People don’t know what dementia is and seek treatment too late. It is an epidemic of unprecedented proportions and our duty as an association is to make governments understand what is coming, to be better prepared,” she adds. The objectives of any policy in this direction would be improved public and professional understanding of dementia among general practitioners, healthcare professionals, policymakers and the media.
“California is developing a State Alzheimer’s Plan. The business sector is getting involved to give more visibility to Alzheimer’s disease as a big social concern,” says Michael Splaine, director, State Policy and Advocacy Programs of the Alzheimer’s Association in the US. “India has a huge problem but it should look at its assets. There are a large number of cellphone users. The network can be used to create awareness, move information, help caregivers,” he adds. The stigma attached to the disease and the false belief that dementia is a normal part of ageing and that nothing can be done constitute the biggest barriers.
Acosta, who as chairman of ADI deals with various governments of low and medium income countries, says: “Creating awareness will help fight the stigma associated with Alzheimer’s and identify the problem earlier to empower the family to seek timely treatment.”
IMPROVE DIAGNOSIS AND TREATMENT: On the home page of the 10/66 DRG is a simple equation: good quality research generates awareness, shapes policy, encourages and pioneers service development. It’s interesting that this organisation was born in Cochin in 1998. Its name 10/66 refers to the two-thirds (66 per cent) of people with dementia living in low and middle income countries, and the 10 per cent or less of population-based research that has been carried out in those regions. Since then it’s working hard to offset this imbalance, and its studies have contributed largely to the revised figures of prevalence and worldwide estimates of dementia.
Prof. Prince says: “Research in this field provides evidence for policy makers. There’s been a great deal more of quality research carried out in India over the past ten years, in Mumbai, Kolkata, Chennai. We’ve had to revise our estimates. We’re looking at probably 3.7 million people now increasing to around 14 million by 2050. It’s a virtual epidemic here and the major concern is that at the moment there are very few services that meet the needs of patients.”
“It’s important that people are encouraged to take the elderly to the doctor in time without waiting for the disease to progress,” says Dr. Mathew Varghese, Prof. of Psychiatry at the National Institute of Mental Health and Neurosciences (NIMHANS).
Dr Suvarna Alladi, Associate Professor of Neurology at the Nizam’s Institute of Medical Sciences, says: “In India the most difficult part for the doctor is reaching the patient because people in the early stages don’t seek help as there is low awareness. Awareness even among primary care professionals is low.”
EFFECTIVE INTERVENTIONS AND CARE: “The family is the bulwark of care, even in the US, and even more so in India,” says Splaine. “We have to figure out how we should support families better to provide care to the patient,” he adds. Prof. Prince says “We are now putting the accent on intervention, in helping the caregiver.”
A study is being undertaken in Goa on the effectiveness of this intervention. “We’ve done a random control trial to evaluate the effectiveness of home care-advisors, trained to provide non-pharmacological interventions for families coping with dementia,” says Dr Amit Dias, India coordinator of the 10/66 DRG. “The intervention helped in reducing the caregiver perception of burden and the caregiver burnout. It is a cost-effective model that could be scaled up and integrated with the existing Primary Health Care network in India to address the needs of people with dementia,” adds Dias.The cost of dementia is enormous and an estimate puts the societal costs at US$ 315 billion. Zodingpuii, from Mizoram, serves in the government and her mother, a former school teacher, was diagnosed with dementia seven years ago. She intends to help set up a chapter of ARDSI in Aizwal. “We have the resources to take good care of my mother, and have three caregivers. We are lucky, but it’s a luxury that the poor people of the village perhaps can’t afford.” The family must be supported in providing care, especially in India as the economic costs, along with the psychological pressure, can be back-breaking.
“In our study we found that a quarter of caregivers surveyed had to give up paid work to be able to take care of the patient,” says Prof. Prince. “In some countries in the west, we have established the principle of providing care-giver benefits, as he saves money for society. Perhaps in India a disability pension could be given, this changes the way an older person is perceived,” he adds.
THE TASK AHEAD: “A preliminary Dementia India report should be ready by the first quarter of 2010,” says Varghese. State-wise figures of dementia patients are being worked out and the economic burden of care-giving faced by a family is going to be estimated. “We will have to analyse these figures and see whether we have the wherewithal to handle the patients,” he adds. “By June 2010 we should have a detailed report and perhaps by September a call to action.”
Till now the government’s attitude has been perhaps Ostrich-like, but Mukul Wasnik, the minister for Social Justice and Empowerment, who spoke at the National Meeting of Experts, has assured that the recommendations from the deliberations will be included in the review of the National Policy on Older Persons.
Meanwhile, every seven seconds there’s a new case of dementia worldwide and in some family, somewhere, a dramatic chain of events is being triggered off.
By Gautam Singh