MEDICINE

Understanding dementia

ASHA KRISHNAKUMAR
in Chennai

An international workshop in Chennai on dementia underlines the need to create awareness about the problem and improve treatment options and facilities, especially in developing countries like India.

N. BALAJI

At the 23rd T.S. Srinivasan Endowment Oration on Dementia in Chennai, Venu Srinivasan (left) presenting a memento to Prof. Jeffrey Cummings. Prof. Krishnamoorthy Srinivas (second right) and T.T. Vasu, Chairman, Public Health and Welfare Society look on.

IN 1950, the world had 12 people in the working age group to support every person above 65. But by the turn of the millennium, there were hardly nine, and by 2050, it is estimated that there will be barely four persons. With life expectancy at birth increasing rapidly, the world's population of the aged has risen, and with it, their problems.

In India, life expectancy at birth has increased by 30 years since Independence, and it is higher for women than men. According to the World Health Organisation (WHO), India's population of those aged over 65, which was 40 million in 1997, is to increase to 108 million by 2025 and 240 million by 2050. This means a several-fold increase in age-related problems such as dementia - a condition characterised by progressively declining memory and intellectual functions. The WHO, which estimates that two out of every three patients with dementia will soon be in developing countries, warns of a virtual dementia epidemic in India and the urgent need to prepare to face it.

Realising the importance of dealing with dementia, the T.S. Srinivasan Charitable Trust organised through the Public Health Centre's T.S. Srinivasan Department of Clinical Neurology and Research, an international workshop on dementia in Chennai in mid-February. The workshop discussed, among other things, the methods of treatment and the research done so far in dementia, as also the immense burden and stress the disease put on families and caregivers. The workshop called for an effort to create awareness about the disease by distinguishing between normal aging and dementia and to provide help to caregivers.

According to the WHO, "dementia is a syndrome due to disease of the brain, usually of chronic or progressive nature, in which there is disturbance of multiple higher cortical functions, including memory, thinking, orientation, comprehension, calculation, learning capacity, language and judgment. Consciousness is not clouded but there is impairment of memory and intelligence." Impairment of cognitive function is commonly accompanied, and occasionally preceded, by deterioration in emotional control, social behaviour or motivation. This syndrome occurs in Alzheimer's Disease (AD), cerebro-vascular diseases, and innumerable other conditions that primarily or secondarily affect the brain.

Since dementia closely resembles symptoms accompanying the normal aging process, it is best detected clinically. For purposes of clinical diagnosis, dementia is broadly classified into cortical and subcortical. While the causes of cortical dementia are AD, frontal lobe degeneration, and Pick's disease, subcortical dementia may be caused by Parkinson's disease, Huntington's disease, Wilson's disease, spinocerebellar degenerations, Lewy body disease, idiopathic ganglia degenerations and so on. There is also the mixed dementia (a combination of cortical and subcortical), caused by strokes or infections. Dementia can also occur owing to toxic ingestions and metabolic changes such as systemic illness and endocrinopathies, and deficiencies of Vitamin B{-1}{-2}, Vitamin B{-1}, folate and niacin. Some of the other causes of dementia are trauma, mass lesions, inflammatory pathology and frontal gliomas.

While over 80 per cent of dementia is irreversible and degenerative, some are reversible. The reversible ones include those caused by drugs and drug toxicity, metabolic changes, Wilson's disease, mass lesions, infections and endocrinal and nutritional problems. But some forms of dementia, such as those caused by chronic meningitis, alcohol abuse, depressive disorders, metabolic changes, endocrinopathies or toxic ingestion, progress rapidly.

According to Dr. Martin N. Rossor of the Institute of Neurology at the University College, London, the central problem of dementia is that it is under-recognised largely because memory loss, the main symptom, is common in old age. There is thus a general perception that dementia is simply because of old age. But this is not true as it is a disease of the brain. A host of diseases, including infections, can cause dementia. But the most common cause is AD - over 60 per cent. The other major cause is vascular disease, that is, stroke. Typically, it is not the big stroke but the small ones, which people may not even be aware of, that cause dementia. The small strokes that normally go unnoticed build up and lead to dementia.

The most important issue in dementia is diagnosis. There are no blood tests for AD, though there are for other causes of dementia such as abnormal thyroid and vitamin deficiency. Imaging helps, but only with vascular diseases such as stroke. But most important, according to Dr. Rossor, is a good understanding of family history. "You have to talk to the patient, his family and conduct a careful examination. That gives you most of the information to make the diagnosis." According to Dr. Rossor, if resources are limited, as in India, it is important to have skilled doctors and nurses who can recognise the disease.

REUTERS/COURTESY DR.PAUL THOMPSON/UCLA

Brain maps, done with magnetic resonance imaging, show the dynamic wave of gray matter loss that occurs as patients progress from mild to severe Alzheimer's disease, in this photograph released by UCLA on February 7, 2003 in Los Angeles. The blue colour indicates brain regions with no detectable tissue loss, red colour denotes regions with up to 10 per cent tissue loss, and white up to 20 per cent loss. The spread of this cell loss is detected by imaging patients sequentially with MRI. Beginning in the temporal brain areas underlying memory function, the deficits spread into frontal and limbic brain regions, leaving sensory and visual cortices spared until very late in the disease. The findings were published by Dr. Paul Thompson of UCLA in the Journal of Neuroscience on February 6.

Some forms of dementia such as vascular dementia (which is largely caused by high blood pressure and smoking) have viable prevention and treatment methods. Vascular dementia, for instance, can be prevented by taking drugs to control blood pressure (which are relatively cheap), abstaining from smoking, and an antioxidant-rich, low-fat diet.

There is no cure for AD, though there are drugs that help improve memory and treat symptoms such as depression and agitation. For instance, a group of drugs called cholinesterase inhibitors, which break down acetylcholine (a neural transmitter), helps in improving memory. These drugs do not cure the disease or stop its progression, and they are expensive too. But there is some hope as an inexpensive Chinese herb, huperzine, which has properties that will help to control the problems of dementia, is in the final stages of research and is to be in the market soon.

Taking care of a person with dementia takes a big toll on the family. Institutions are needed to take care of them and also to relieve the caregivers, in particular, from stress. However, for quality care that is cost-effective, there is nothing like home care. There is a need for good support systems, which are woefully lacking in India.

Some organisations such as the Alzheimer's Disease International (ADI), an umbrella body of national Alzheimer's associations around the world, is creating awareness and managing people with dementia, particularly in developing countries. From a four-member organisation in 1984, the ADI has grown into a 64-member one today. All its new members are from developing countries. According to Dr. Nori Graham, head of the ADI, there are some 18 million people with dementia the world over. Just as with mental illnesses, a stigma is attached to dementia. Families are reluctant to admit that they have someone with a dementia problem for fear of social consequences.

This is why awareness about dementia is urgently needed, particularly in developing countries, which have to prepare for a problem that is threatening to blow up into a virtual epidemic in the next two decades. It needs preparation to create awareness that dementia is a disease and not a problem associated with the normal aging process. This is important for both the families and medical professionals, as first, dementia has to be recognised, at least suspected, by the former and then diagnosed and treated by the latter. That is the biggest challenge today.

In most developed countries, there is awareness about dementia and a host of specialists - doctors, nurses and social organisations - to take care of the patients. In the United Kingdom, for instance, the government plays a central role in dealing with dementia. But in developing countries, where public health expenditure has been declining over time, there is a major problem when it comes to treating dementia.

According to Dr. Graham, the public health system in the U.K. is the most important contributor to the creation of awareness, treatment and management of dementia. The British public health system, despite problems, has a good basic framework in place. There has been considerable public spending in this area, especially as not many people can afford the treatment and management cost; the private sector's contribution is minimal. Says Dr. Graham: "If a dent has to be made in dealing with dementia, the state has to play the lead role, with voluntary agencies such as the ADI filling in the gaps. This has been the sole factor that has led to success in dealing with the problem of dementia in developed countries."

According to Dr. Vijay Chandra, head of Neurosciences, WHO - South-East Asia region, the WHO works closely with the Government of India in order to address the "mental health needs of the vulnerable groups", including dementia.

Governments are just beginning to understand that this is an important problem. A major problem in the management of dementia patients in India now, according to Dr. Vijay Chandra, is the disintegration of the joint family system and the emergence of nuclear families, which has affected the care of the aged the most. He says: "We are getting caught in a no-win situation. There is no institution in place to take care of the elderly, nor is the traditional joint family system that takes care of the elderly intact." According to him, patients with dementia, particularly the elderly, are best taken care of at home and not in an institution. There is also an economic basis to it. "The government spends Rs. 500 per day for a person in mental hospitals (which, in most cases, are also falling apart), while it spends less than Rs. 200 a year for a person by way of public health expenditure. That is why a change in priorities becomes important and a plan imminent," he says. For this, there is need for training programmes for family members - first to identify the problem and then to manage patients. A monetary compensation for the caregiver may also help - an idea that the Government of India is thinking about.

A massive plan has to be drawn up to handle dementia in India as it threatens to assume epidemic proportions in the not-too-distant future. The roles of multilateral as well as government agencies, non-governmental organisations, medical experts, families and so on need to be defined clearly after a detailed study to understand the magnitude and dimensions of the problem, including its spread and treatment options. The programme for each disease should not be a vertical one, but a horizontal one that integrates and combines resources, management and training.

A lot of research is warranted in this area. The Indo-U.S. Cross National Dementia Epidemiology study, done using a sample of 5,000 people over 55 years and spread over 11 years (1989-2000), showed that the risk of the disease is lower in India than in the U.S. Diet - which is low in fat and rich in anti-oxidants - was found to be the major reason for its lower prevalence in India. But more research is needed to prove this conclusively.

The results were similar in the U.S.-Japan and Africa-U.S. studies. The risk of getting AD was lower in Nigeria and Japan than in the U.S. But when Nigerians or the Japanese went to the U.S. their risk increased, probably due to a change in their diet from low to high fat. The gene-environment (diet) component can probably offer some useful clues on how dementia develops in a potential victim. But further research is required to establish this conclusively.

The 10/66 Dementia Research Group (so called because two-thirds - 66 per cent - of all people with dementia live in developing countries, though less than one-tenth of population-based research is directed at these regions), started by Dr. Martin J. Prince, Professor of Epidemiology at the Institute of Psychiatry and London School of Hygiene and Tropical Medicine, U.K., is an international academic partnership for collaborative research in dementia, particularly in developing countries. The 10/66 Group aims to quantify the prevalence and incidence of dementia, study its impact on caregivers and evaluate the various care options available. The main finding by the group, which has 26 research centres across the world, is that AD impacts severely on families that have relatively low incomes.

According to Dr. K.S. Shaji, Professor, Government Medical College, Thrissur, Kerala, who is coordinating the 10/66 Dementia Research Group in India, private treatment is expensive and beyond the reach of most Indians. The low-cost public healthcare system is not designed with the elderly in mind. People have to travel miles to reach a public health centre. Thus, the identification and management of dementia, the two central issues of the disease, are the focus of the 10/66 Group, which has trained 120 researchers in 26 countries to identify and manage the disease at the local level. It is now in the process of identifying the risk factors of dementia - lifestyle, environment and genetics. Says Dr. Martin Prince: "We hope these studies will impact on policy-makers, and offer relief to people with dementia and to their families."

According to Vijay Chandra, India needs to attack the problem from several angles - initiating research on issues such as the role of antioxidant-rich, low-fat diet, and developing models of caring. But for all this, a beginning has to be made by setting targets based on reliable data, drawing up a broad plan of action and by apportioning work to different players. There is no dearth of funds. Only, there needs to be a viable programme.

Bridging neurosciences with public health ENDOWED by the T.S. Srinivasan family of the TVS Group of companies and headed by Dr. Krishnamoorthy Srinivas, an eminent neurologist, the T.S. Srinivasan Institute of Neurological Sciences and Research at the Public Health Centre in West Mambalam, Chennai, is a contemporary example of an independent, multi-disciplinary, non-profit-making healthcare provider, accessible to the weaker sections of society who cannot afford corporate healthcare. Apart from serving the immediate community in Chennai, the institute has contributed to the education of neuroscience professionals and the public all over India by organising a series of visiting professorships and the T.S. Srinivasan orations consecutively for 23 years. In recent times, these have coincided with the organisation of themed workshops about major neurological disorders, epilepsy, Parkinsonism and most recently dementia. The workshops have brought many recent advances to the attention of Indian doctors and empowered the public with the latest information about common neurological disorders. The workshop on dementia in February 2003 succeeded in taking these interactions with the public a step further, through an Indian ballet depicting the problems of a person with dementia, and a public forum and panel discussion on "Dementia! We all know it exists: Why the deafening silence then?" Significant recent developments at this institute include the establishment of an Epidemiology and Clinical Research Unit and a linked chair in clinical research for Dr. E.S. Krishnamoorthy, an international expert in behavioural neurology; and the establishment of specialist multi-disciplinary services for dementia, Parkinsonism, epilepsy and other disorders with particular focus on comprehensive physical and emotional rehabilitation.

Printer friendly page  
Send this article to Friends by E-Mail