“Paramjit Rawat, aged 76, wheat complexion, 5’7”, wearing half-sleeve white kurta and dhoti. Missing since 22/12/2018. He was without footwear and walks with a stupor. Suffering from memory disorder but can remember his house name C4, Mayur Vihar, If found, please contact 991XXXXX76”
T hese sort of notices alongside the picture of the missing person are not a rare sighting on the pages of India’s national and regional newspapers these days.
The number of desolate people who are desperately groping in the recesses of their memory even to find own names are going up exponentially by the day as a cloud of dementia descent upon the elderly in the world’s second most populous country.
Though the exact figures are not available, an estimated 4.1 million people are suffering from some form of dementia, according to the ‘Dementia India’ report published by the Alzheimer’s and Related Disorders Society of India. The numbers are expected to double in a decade and a half.
The life expectancy of the Indian population is increasing with improving healthcare. So is the number of aged people. Today, the majority of Indians live past their 70s. The elderly population is growing rapidly, by 3 percent annually, according to the India Ageing Report 2017.
Such long life was a rarity till some decades ago where not many people lived through their 60s or even their 50s. A long life comes with its own intrinsic perils, experts say.
“See, it’s a kind of trade-off. Here you buy longevity at the expense of [living with] many a disease,” points out Dr K Rajasekharan Nair, Emeritus Professor of Neurology at Medical College Hospital, Thiruvananthapuram, India. The advances in modern medicine have made a large number of diseases and conditions — which could otherwise prove fatal — curable or manageable. Survival has increased through effective management of several chronic conditions.
As the population of the elderly grows, the number of cases with dementia will also go up, because Alzheimer’s is, largely, a disease of the elderly. Most often it begins in people over 65 years of age.
Symptoms subtle; progress slow
A neurodegenerative disease usually progressing through a span of 8-10 years, Alzheimer’s often starts with subtle symptoms which are neglected by most people. Since memory problems are a part of the ageing process, most of us won’t pay heed to such complaints until the disease starts manifesting in its full and ugly form.
One of the characteristic features of Alzheimer’s disease (AD) is the loss of imminent or present memory, explains Dr Rajasekharan Nair, who is also an expert in cognitive neurology. “The person will remember everything that happened 50 or 60 years back. His school days, his childhood friends, his class teacher… but he would not be able to recall what he had for lunch an hour ago or the fact that his wife passed away a year ago. They would not know the place they were sitting then… All of a sudden, they begin to feel that something is amiss.”
Generally, AD courses through different stages of progression such as anomia (difficulty in remembering the names of people and objects); agnosia (inability to recognise things); apraxia (loss of ability to carry out voluntary movements) and aphasia (loss of language). However, these classical symptoms may not be typical to all patients. Alzheimer’s affects people in different ways, each person may experience symptoms — or progress through the stages — differently. There are cases where one or the other of these functions retained. Areas involved with learning and memory are usually affected first. Later, regions involved in planning and carrying out tasks start deteriorating. Ultimately, the areas of the brain responsible for coordinating basic bodily activities such as walking, and swallowing are impaired.
Caring – A formidable challenge
With the progress of the disease, the person loses interest in everything. Gradually, the victim starts losing all the inhibitions. Inhibition is one of the crucial functions of the brain. Nearly 100 billion neurons in the brain exchange trillions of impulses at a time. Controlling the surge of the impulses is one of the prominent roles of the frontal lobe. Inhibition, in a way, helps us behave as well-mannered people. It is an essential aspect of social living. Once inhibition is lost, we can become unruly. Behaviour becomes unpredictable. When sitting at home, they don’t know how to sit or if they should be wearing clothes. This happens due to the degeneration of neurons. The person becomes unable to perform everyday activities. When the patient loses self-care, he or she becomes a liability for the caregiver. People in the final stages of the disease are bed-bound and require around-the-clock care. Naturally, more than the patient, it is the caregiver who suffers most in AD.
Caring for a person with Alzheimer’s dementia poses special challenges as people in the middle-to-later stages of Alzheimer’s experience losses in judgment, orientation and the ability to understand and communicate effectively. Family caregivers must often help people with Alzheimer’s manage these issues. Changes in the personality and behaviour of a person with Alzheimer’s are the most challenging for family caregivers.
Most importantly, individuals with Alzheimer’s require increasing levels of supervision as the disease progresses. This is where countries like India fall short due to inadequate awareness of the disease. The tendency is always to ignore memory problems in the elderly, simply attributing them as part of the aging process. So, it is not uncommon that people like Paramjit Rawat stray from home, often imperiling their own life.
Despite the high prevalence, only a small fraction of patients have been formally diagnosed or treated in India, experts say.
The maximum number of new cases of dementia will come from India and China, said Vijayalakshmi Ravindranath, Ph.D., director, Centre for Brain Research, while addressing an Alzheimer’s Association symposium held recently in Bengaluru. The number of the elderly in India would go up from the current 143 million to 300 million by 2050, she noted, emphasising the need to invest in research and identify risk and protective factors that contribute to diseases of the aging brain.
Globally, as many as 50 million people are afflicted with dementia, and every three seconds someone in the world develops dementia. Dementia is the seventh leading cause of death worldwide, shows the 2018 World Alzheimer Report.
Unlike the western population, India has a high load of vascular risk factors. That is another reason why the incidence of dementia is high in the country. “In European countries or in Japan, people take good control of the vascular risk factors pretty early in their lives. Dementia numbers there are not rising for the last couple of years. In India we don’t know how to age gracefully,” comments Dr Ganesh Chauhan, Assistant Professor at the Centre for Brain Research, Indian Institute of Science, Bengaluru.
On the other hand, he adds, Indians do have certain factors working in their favour, which are supposed to be protecting them from neurodegenerative diseases, such as the joint family system, bigger social networks, bilingualism etc. Socialisation is a very protective factor.
The hunt for a cure
Even as Alzheimer’s grows to epidemic proportions, researchers are scrambling for a remedy for the disease, which is considered one of the most challenging medical mysteries of our time.
No pharmacologic treatment is available today to slow or stop the damage and destruction of neurons. Rivastigmine, galantamine, donepezil, memantine, memantine combined with donepezil, and tacrine are the six therapies approved by the US FDA to temporarily improve symptoms in Alzheimer’s.
Over 120 drugs are now in clinical trials as part of the search for novel treatments for Alzheimer’s disease. Many of these trials are in phase 2, with results expected to be out in the next few years. Presently, a good proportion —about 20% — of all the clinical studies revolve around beta-amyloid and tau, the culprit proteins implicated in the development and progression of the neurodegenerative disease.
It is, however, not clear if amyloid and tau represent valid drug targets. “We don’t understand the exact mechanism. But most researchers are not ready to abandon these classic pathologies,” quips Dr Howard Fillit, MD, Chief Science Officer of Alzheimer’s Drug Discovery Foundation (ADDF), New York, a non-profit organisation which supports scientists around the globe who are investigating novel drugs to prevent, treat and cure Alzheimer’s disease.
Therapeutic attempts to remove or lower the production of beta-amyloid have been largely unsuccessful in altering the disease course of Alzheimer’s disease. Since Alzheimer’s has a complex and interrelated set of causes, we will need more than one drug to treat the disease, like with cancer.
Probe on lifestyle
As far as late-onset Alzheimer’s is concerned, the greatest risk factors are older age, having a family history of Alzheimer’s and carrying the ApoE-e4 gene.
Prevention studies are also looking to identify the link between lifestyle and dementia. Several major clinical trials are underway around the world to test the effect of adopting healthier lifestyle habits to prevent cognitive decline, Alzheimer’s and other dementias. In the U.S., the Alzheimer’s Association is leading the U.S. Study to Protect Brain Health Through Lifestyle Intervention to Reduce Risk (US POINTER). The US POINTER is a two-year clinical trial to evaluate whether lifestyle interventions can protect cognitive function in older adults at increased risk for cognitive decline.
Earlier, a landmark study called the Finnish Geriatric Intervention Study to Prevent Cognitive Impairment and Disability (FINGER) showed heart health management, a healthy diet and increased exercise, plus intellectual and social stimulation can slow cognitive decline in at-risk older adults. FINGER studies are being carried out in China, in Singapore and in Australia.
The costs of long-term care for individuals with Alzheimer’s are substantial, as dementia is one of the costliest conditions to society. The total per-person health care and long-term care payments from all sources for Medicare beneficiaries with Alzheimer’s or other dementias were over three times as great as payments for other Medicare beneficiaries in the same age group in the US, according to 2018 Alzheimer’s Disease Facts and Figures by Alzheimer’s Association, Chicago.
Such cost estimations are yet to be carried out through studies in India, where AD has not become a public health concern yet like in many other parts of the world.
Stigma is yet another issue. A substantial amount of stigma is still attached to dementia in India. “Not only dementia, almost every disease affecting the brain is considered ‘paagal’ (lunacy) in many parts of India. Woh toh paagal hai (the person is mad) … this is the way people describe individuals with neurological disorders,” comments Dr Chauhan. Chauhan and others in CBR are part of a soon-to-be-launched large-scale genome-wide study on Alzheimer’s and other dementias in the country. Currently, whatever data on Alzheimer’s is available is limited to certain pockets, or based on the information provided by hospitals. Initial results of the study could be out within the next couple of years. The data will put things in perspective. Hopefully, a clear understanding about the prevalence and other aspects of the disease could not only help create appropriate policies, but also bring down the stigma. As World Alzheimer’s Report 2018 by Alzheimer’s Disease International, UK points out: “More diagnosis means more awareness. More awareness means less stigma. Less stigma means more hope.”