Dementia: When 'losing your mind' is not a figure of speech

But there is another set of silent diseases, less understood, under-diagnosed and under-treated, that threaten to pose a Herculean challenge. This set of diseases is particularly pernicious because of the effect it has on the mind; gradually eroding it, rendering the afflicted incapable of completing basic tasks and making them entirely dependent on caregivers, mostly family. It goes by the overarching name of dementia.

The impact of dementia is not only on the patient, but on the society as a whole. For instance, caring for those afflicted imposed a cost of nearly Rs 15,000 crore on society, according to the Indian Dementia Report, 2010 published by New Delhi's Alzheimer's and Related Disorders Society of India (ARDSI). That is roughly the market capitalization of India's largest hospital chain.

According to numbers from the World Health Organization (WHO)'s Global Burden Disease Report 2004 quoted by the India Dementia Report, the global age-standardized death rate for Alzheimer and other neurological disorders is 6.7 per 100,000 for males and 7.7 per 100,000 for females. For India and the WHO SEARO D sub region (of South East Asian countries), the dementia mortality rate is 13.5 per 100,000 males and 11.1 per 100,000 females. Compared to other chronic medical conditions (heart diseases, cancer and stroke), Alzheimer’s - a form of dementia - is the fourth leading cause of death in the Asia Pacific Region.

Going forward, it is estimated that low and middle income countries will bear a greater part of the burden of people living with dementia.

What is dementia?

The India Dementia Report defines it as a syndrome (a collection of symptoms), usually chronic, characterized by a progressive, gradual deterioration in intellect including memory, learning, orientation, language, comprehension and judgment due to disease of the brain.

Unlike diseases such as diabetes or dyslipidemia that usually strike people in their prime and are managed into old age, dementia almost exclusively affects older people; only 2% of cases start before the age of 65 years, says the Report. After this, the prevalence doubles with every five year increment in age.

Dementia is one of the major causes of disability in late-life, says the Report. But the symptoms such as memory loss, and difficulty performing familiar tasks, are often confused with the natural process of ageing and hence do not raise red flags. The common causes accounting for 90% of all cases are Alzheimer’s disease, Vascular Dementia and Dementia with Lewy bodies and Frontotemporal Dementia.

The Report estimates that 3.7 million Indian citizens have dementia. Given the growing population of the aged, this number is expected to almost quadruple by 2050 to 14.3 million, a little greater than the population of Mumbai as it stands today.

The value of knowing

There is no cure for dementia, it can only be managed. It is progressive and cannot be reversed. That begs the question – wouldn’t it be better to be ignorant if you have it? Would knowing serve any purpose?

The short answer to the first question is - No. And to the second -Knowing is vital.  The sooner the better. There are several reasons to support early diagnosis. These include early intervention that can ease symptoms, improve quality of life and lower cost and the removal of uncertainty, which by itself, causes significant mental stress. It also helps both patients and caregivers prepare - financially and emotionally - for eventualities, and to seek help.

This is supported by studies conducted in different parts of the world. For instance, in 2010 one study conducted in the US found that early diagnosis followed by information and support reduced outpatient costs by almost 30 per cent. Government agencies such as the National Health Service (NHS) of the UK have also come out in support of early diagnosis as it helps to "get the right treatments, find the best sources of support, as well as to make decisions about the future."

Diagnosis involves a combination of conversations with the patient and family members, a physical exam, memory tests and/or brain scans, according to the Alzheimer's Society.

Ignorance is not bliss

New research suggests that the general public would also prefer it that way. A recent study conducted by market research agency Millward Brown for GE Healthcare, the US-based company that makes diagnostics for a range of diseases including dementia, found that three quarters of a universe of 10,000 adults surveyed across 10 countries wanted to know what kind of neurological disorder they had. Even if there was no cure.

Surprisingly, India - in spite of its supposed culture of fatalism - was one of the countries that ranked high. 90% in India consider accurate diagnosis to be very or fairly important in detection of disease. This is good news given that India is less familiar than other nations with the signs and symptoms of dementia. 70 per cent of those surveyed here said they would want to know if they were afflicted, while only 17 per cent said they'd rather not know as the stress would limit their ability to deal with the illness.

A whopping 83 per cent of those who supported knowing thought that there should be access to diagnosis before symptoms became apparent. And this, in spite of the fact that the adults surveyed were less familiar with dementia than those from the other nations.

The percentage of those wanting to know was even higher among those over 40 years of age (73 per cent) and those who had been hospitalized (85 per cent). Women were more likely to want to know than men (74 per cent vs. 65 per cent) not just for themselves but also for those close to them (79 per cent vs. 69 per cent). 82 per cent of those who supported early diagnosis were willing to pay out-of-pocket for it though an overwhelming majority (93 per cent) thought it should be covered by health insurance.

And then what?

The reasons for knowing ranged from starting treatment to managing symptoms (69 per cent), to the ability to make informed decisions (55 per cent) and to a lesser extent the time to fulfill personal ambitions (32 per cent).

Are these justifiable expectations? Definitely. According to the Dementia Report, partially effective treatments are available for most core symptoms of dementia though they do not alter the course of the disease. According to UK's NHS, in certain types of dementia, such as Alzheimer's, drugs such as donepezil, rivastigmine and galantamine improve symptoms by making the remaining brain cells "work a bit harder." Some dementia is caused by deficiencies such as of vitamin B12, and folic acid or brain tumors. If detected in a timely manner, the underlying causes can be treated thus making this type of dementia reversible.

The Report also notes that psychological interventions such as cognitive stimulation are beneficial in the early stages of the disease but are not of much use in the later stages. Similarly, care giving that is provided at a lower cost thanks to early diagnosis reduces strain on the caregiver - typically a family member who may be in the productive age group.

India ill-equipped

India still has a long way to go to meet these expectations. "Lack of awareness among professionals, the family and community, policy makers and agencies to the needs of persons with dementia has led to dementia care being absent or delivered piecemeal and in an inefficient fashion in India," says the Report. It notes that there are hardly any standard practice guidelines and treatment centers in India and that the current health and social care system is ill-equipped to support dementia sufferers or even their caregivers with just 10 Day Care centers for dementia patients. This is not tenable given the projected burden of dementia in the years ahead.

Indeed, diagnosis is a global challenge. According to non-profit Alzheimer's International, research shows that most people currently living with dementia have not received a formal diagnosis. In high income countries, only 20-50 per cent of dementia cases are recognized and documented in primary care. This ‘treatment gap’ is certainly much greater in low and middle income countries, it says observing that one study in India suggested that 90 per cent cases remain unidentified.

It is time that dementia be made a national priority and given its due on various aspects of diagnosis, treatment and care giving. In the long run, the ultimate aim of knowing should be to live well in spite of dementia with a measure of independence.