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Category: Elders

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Adults Bipolar Disorder Elders Expert Blogs

From Elusive Cure to Enabling Comfort

We must consider quality of life and wellness as treatment outcomes and ask ourselves whether the treatment we opt for will help us achieve these outcomes.

Quality of life is a relatively novel concept that dominates both medical science and health policy today and is widely accepted as the best indicator of outcome of treatment. The focus among practitioners of modern medicine, and indeed, in social consciousness, however, remains firmly on the elusive concept of “cure.” The adage among medical practitioners of yore: “to cure sometimes, control often; but comfort always,” hints at the importance of life quality, one that is forgotten, however, in the quest for miracle cures.That the majority of chronic conditions defy cure is something doctors know, but often choose to be agnostic of. Thus apart from infections, inflammations, metabolic disturbances and transient visitations of their ilk, that respond well to drugs designed to terminate them; and indeed abnormalities of structure (organs that have lost structural integrity) that are amenable to surgical intervention, the vast majority of medical conditions while potentially controllable, are not curable. Diabetes, hypertension, high cholesterol levels, ischaemic heart disease, stroke, epilepsy, dementia and a host of other conditions while “treatable” and/or “modifiable” (relief from clinical symptoms and attendant complications) are not “curable.” The promise of a “cure” for many chronic diseases thus remains wishful; that rainbow with its elusive pot of gold, at the end of the dark, illness cloud.There is no doubt we are living longer as a society, and this longevity is attributable, in great part, to advances in modern medicine; cardiac bypass procedures, joint replacements, organ transplants and such like. There is ample evidence to support our collective social longevity, the average Indian lifespan having increased by over a third, since the time of independence, the increase being greater in “advanced” societies like Japan. However, whether such longevity leads automatically to enhanced quality of life remains a conjecture. For example, the follow-up data after a cardiac bypass surgery, arguably the best known lifespan enhancing procedure, shows in many studies high rates of depression and cognitive dysfunction (memory and higher order brain function problems) 5-10 years after the procedure. It would be fallacious to blame the bypass procedure for these complications in the brain and mind; after all, had the person with ischaemic heart disease lived long enough, without the procedure, he might have developed these anyway. However, in evaluating the overall “success” of such procedures or advocating their widespread application through policy implementation, these factors must be considered carefully. In this instance, the question that begs our attention is: “while the procedure enhances lifespan, does it enhance the quality of life?” And if it does not for a select group, who constitutes the group? Why not for it? When does it enhance the quality of life, and when doesn’t it? What determines the outcome in a given individual? Where and how is this outcome determined? These questions need clear answers and we do not always have them.It is striking how both modern medicine and society are obsessed with the concept of “cure,” the quest for magic pills (or, indeed, magic procedures) that will help achieve the longevity goal, being never ending. The energy, enterprise and expense invested in this quest, by affected individuals, their families, and governments are, unfortunately, not always rewarded with a good quality of life after the procedure. Our obsession with “cure” probably comes from two very different directions. The first is idealistic; the tantalising possibility that we will, through advancements in science and technology, “fix” the vast majority of problems concerning the human body. When mankind has learnt to fly, build tunnels through mountains and under the sea, and transport itself into space at will, this aspiration of curing chronic diseases and enhancing longevity does not really seem that distant a frontier.The second, however, probably has more sinister origins that merit careful consideration. The business of curative medicine is enormously lucrative and demands the constant creation of markets that will utilise the goods and services it develops. What could interest the human race more than the possibility of a cure for illness and life-enhancement (with or without quality)? A degree of scepticism of novel, potentially curative treatments is, therefore, warranted in the modern social context, and we must examine carefully whether the promise of “a magic cure” for any chronic condition guarantees alongside an improvement in the quality of life. Thus, while we share a collective belief that people not only live longer due to advances in medical science but also live well, the presumption of a better quality of life, is sadly, in many instances, just that — a presumption!Scientifically viewed, the proof that many modern medical treatments enhance the life quality remains tenuous, to say the least. At a recent lecture in VHS, Chennai, Shah Ebrahim, Professor at the London School of Hygiene and Tropical Medicine and Chair of the South Asian Chronic Diseases Network, a renowned international expert on chronic disease epidemiology, rued our societal predilection for magic bullets (The Hindu, January 9, 2010). Talking about the “polypill” — a combination of aspirin (blood thinner), a Statin (to lower cholesterol levels), and antihypertensive agents (to lower blood pressure) — that is intended to enhance cardiovascular health, he pointed out that simple health promotion measures such as changing over to rock salt from processed salt (high in sodium) and using soya oil as opposed to palm oil (which strangely attracts a lower tax probably due to anomalies in trade policy) were just as likely to improve cardiovascular health. These are far cheaper for governments to implement, and relevant to developing nations.Prescribing the widespread use of the polypill for the middle-aged, as opposed to implementing these simple public health interventions through changes in policy, both health and trade, will be deleterious in many ways, he opined. It will be costly to the nation and poorly sustainable, will have low penetration in society and perhaps, most importantly, take away the responsibility for our health from us, placing it firmly in the hands of the pharmaceutical industry. Further, the former approach, of making people assume responsibility for their lifestyle and diet, alongside the implementation of a complementary government lead policy, is far more likely to enhance other desirable health behaviours in society and, indeed, global health outcomes.Why do we then as a society look to the “polypill” with such enthusiasm or consider it with such seriousness? The answer probably lies in our preference for “cure” as opposed to comfort and life quality. Happily for us, improved quality of life and “wellness,” a concept that has traditionally dominated eastern thought and traditional medical systems, is today receiving much global attention. Wellness encompasses both physical and mental well-being, the latter being a dynamic state of optimal functioning referring to the individual’s ability to develop his or her potential, work productively, build strong and positive relationships with others and contribute to the community. We must recognise that the prevention and management of diabetes extend far beyond the popular notion of blood sugar control; that cardiac health cannot be achieved merely by unblocking blood vessels and enhancing circulation through a stent or bypass; and indeed that the drugs for dementia available today do not even guarantee slowing of disease progression, let alone cure or reversal.Given this scenario, we as a nation and society must consider quality of life and wellness as treatment outcomes, quite seriously, and ask ourselves whether the treatments we are considering, however technologically advanced and seductive, will likely help us achieve these outcomes. We would also do well to examine closely the role of traditional and indigenous medical systems that have for centuries retained this focus on wellness and life quality through health promotion, prevention of illness, care and comfort for those affected with chronic illness; not merely curative treatments.

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Adolescents Adults Bipolar Disorder Children Elders Expert Blogs

The Mind in Modern Medicine

The view that it is not enough to heal the body of the affected person, that we must also heal the mind, is gaining credence.It is curious that the mind, so important at the turn of the 20th century, is experiencing today a reawakening in scientific and societal consciousness. The founders of modern medical science in the 18th and 19th centuries had clearly conceived the mind to be a representation of the brain; people like Alois Alzheimer demonstrated pathological abnormalities in the brain of people affected with dementia. Indeed, centuries earlier, the father of modern medicine, Hippocrates, had firmly placed “our joys, sorrows, desires and feelings” in the brain.Sigmund Freud, who started his career as a neurologist, developed an interest in the mind while a student of the legendary neurologist Charcot in Paris. Charcot was deeply interested in hysteria, that condition where physical symptoms like fainting, seizures and paralysis are expressed due to an abnormal emotional state, rather than an abnormal physical state.

Many aspiring neurologists of the time including Freud were attracted to Paris by Charcot’s knowledge and erudition.Sigmund Freud, however, branched off from Charcot to develop his own hypothesis of the human mind, in what famously became the school of psychoanalysis. Freud took the exploration of the mind in hysterical states deeper, into areas that few physicians before him had dared to tread. His theory of “consciousness” attempted to explain the role of deep-rooted emotional conflicts originating in early life, in developing symptoms of the mind later on. Freudian thought is complex, requiring many hours of concerted study. In a nutshell, Freud proposed that the human tendency was to repress anxiety provoking emotional conflicts that the conscious mind could not possibly contemplate.

While these thoughts were confined to the unconscious mind, there were, inevitably, times when they emerged into the conscious, and given their unacceptable nature manifested (were converted into) a physical symptom, instead. Freudian thought spawned a school of psychoanalysis which dominated the practice of “psychological medicine” for over a century. However, his all-pervasive view of sexual underpinnings for all manner of emotional conflict, for example the Oedipus complex where the mother is the inappropriate object of sexual attention of the male child, was not accepted in its totality by his contemporaries.Two milestones in the latter half of the twentieth century brought the mind firmly back into the realm of brain science. The first, the discovery of the neuroleptic drug chlorpromazine that could control effectively the symptoms of serious mental illness like schizophrenia, followed on by a range of psychotropic drugs with potential to address a range of other emotional symptoms, provided indirect evidence that the brain had a role in the development and manifestation of human emotions. The second, the development of several dynamic brain-imaging tools in the last two decades of the twentieth century and the first decade of the twenty-first, has transformed our understanding of the human brain and mind, permitting us to visualise live, brain activity during a psychological task.

Crossroads

The brain and mind interface is therefore at an interesting crossroads in modern medicine. There is a growing understanding in medical science of the role our brains play in determining what are predominantly emotional symptoms. Research, for example, has shown that people with psychopathic personalities, hitherto considered to suffer from a disorder of the mind, have a poor perception of others’ facial emotions, and experience difficulties in affect recognition (that is, gauging the other person’s mood). These abnormalities in perception have been linked to abnormalities in brain function, the amygdala, part of the emotional brain, being implicated in many instances. Clearly, as our ability to image the mind expands, so will our understanding of brain-mind relationships and knowledge of “how the mind works!”From a social and health policy perspective, the mind has assumed considerable importance. In a seminal paper, “The Mental Wealth of Nations,” published in Nature (Volume 455; October 23, 2008), Beddington and colleagues emphasise that countries must learn to capitalise on their citizens’ cognitive resources if they are to prosper, both economically and socially, and that early interventions for emotional health and cognition will be the key to prosperity. Reporting the Foresight Project on Mental Capital and Wellbeing commissioned by the U.K. Government Office for Science, they introduce two important concepts.

Mental capital encompasses both cognitive and emotional resources. It includes people’s cognitive ability; their flexibility and efficiency at learning; and their emotional intelligence, or social skills and resilience in the face of stress. Mental well-being, on the other hand, refers to individuals’ ability to develop their potential, work productively and creatively, build strong and positive relationships with others and contribute to their community. The importance of detecting mental disorders early, the role of science, for example neural markers for childhood learning disability; the development of early interventions that enhance mental capital and mental well-being, boosting brain power through the lifespan; and encouragement for processes that will help people adapt well to the changing needs of the workplace, as also engage in life-long learning, are highlighted here.From a clinical practice perspective, the importance of mental health, wellness and health-related quality of life as outcome indicators of both physical and mental disorders is becoming widely accepted.

The view is that it is not enough to heal the body of a person affected with physical disease; it is also crucial that we heal the mind, enhancing wellness, is gaining credence in modern medicine, quality of life having become established as the best outcome of treatment. Indeed, the reintegration of people into society as they recover from illness requires as an imperative the restoration of both their mental capital and mental well-being. Pray, what is the status of hysteria, that original symptom of the mind, in this era of modern medicine, you may well ask. It is noteworthy that a whole range of bodily symptoms that have no physical basis — tension headache and chronic fatigue, atypical facial pain, atypical chest pain, irritable bowels and bladder, fibromyalgia, burning in the private parts, to name just a few — all have their putative origins in the theory of hysterical conversion. It is estimated that between 20 per cent and 35 per cent of all primary care consultations and about a fifth of all emergency room visits are for physical symptoms such as these, that do not have a physical basis. They are also responsible for the loss of many patient and caregiver workdays; untold suffering and burdensome expense, both personal and social; and unnecessary investigations in pursuit of that elusive diagnosis.Physicians who frequently encounter these symptoms have learnt to spot the telltale signs that are their forerunner: multiple consultations (doctor shopping); the large bag filled with a variety of investigation reports that have mysteriously failed to identify “anything wrong”; the constant need for reassurance, combined curiously with disbelief in the doctor’s opinion, notwithstanding his erudition; the development of new symptoms, without any apparent physical basis, soon after old ones disappear; disenchantment with the medical profession for failing to diagnose, sometimes even subtle pride in being “such a difficult diagnostic dilemma”; as indeed the failure of any serious setback to manifest itself despite months, sometimes years, of ongoing symptoms… the list of diagnostic clues is endless.

The French physician Briquet described this syndrome which for many years carried his name. In modern medicine this ailment goes by the name “Somatisation Disorder.” And in the clinic setting, in an era of advancing diagnostic technology, it has become the most common manifestation of hysteria. Indeed, somatisation, thought to be more common in non-western cultures with traditionally limited verbal expression of emotions, is almost becoming fashionable, akin to “swooning” (another hysterical symptom) in the Victorian era.Hysteria does therefore exemplify the importance of the mind in modern medicine. It may well have origins in the brain, which future research may reveal: it clearly is a significant public health problem that does affect mental capital and well-being; it does pose a tremendous drain on the public exchequer and private resources; it has potential for cure through early diagnosis and intervention; and interestingly, may well be the last frontier to traverse at the interface between the brain and mind.

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Elders Expert Blogs

Population Ageing: An Area of Darkness

It is a challenge for policymakers, care providers and society as a whole.

Population ageing has emerged as the grand challenge of this century; for policymakers, care providers and society as a whole.

A review of India’s population census is insightful. In 1961, the population of the elderly was placed at 24 million; it increased exponentially to 43 million in 1981; 57 million in 1991; and about 77 million in 2001.

The proportion of the elderly in the total population also rose from 5.63 per cent in 1961 to 6.58 per cent in 1991 and to 7.5 per cent in 2001. India has thus joined the rank of “Greying nations” with over seven per cent of its population in the 60-plus years segment. A United Nations report has predicted that India will have 198 million ‘Old’ (60+) people in 2030 and 326 million in 2050. Currently, there could be around 100 million ‘senior citizens’ in India.

The Problems

Studies have shown that elderly people in India suffer a double-whammy effect; the combined burden of both communicable (usually infectious) and non-communicable (usually chronic and lifestyle related) diseases.

This is compounded by an impairment of special sensory functions like vision and hearing that decline with advancing age. Thus, elders have a considerable burden of both infectious diseases like tuberculosis and chronic illnesses such as diabetes mellitus, ischemic heart disease, and cancer. Indeed, a survey of elder health in Kerala showed that over a third of all elders suffer from chronic diseases and have a medical consultation or admission necessitated by illness in each year. Notably, the majority prefer to use private health-care services, even though they are more expensive, service quality being an important reason for such a preference.It is also clear that disability and frailty accompany aging, especially after the seventh decade.

Thus 25-27 per cent of Indian elders have visual impairment; 12-14 per cent are hearing deficit; eight pre cent are immobile and confined to home or bed, this figure rising to 27 per cent after 80 years, women being more vulnerable. Falls are a common problem causing disability; with over half of all the elderly in some studies having suffered a fall with or without serious injuries like fractures and dislocations. While aging is not synonymous with disability, a large proportion of the Indian aged population is disabled, the severity of disablement increasing with age: 36 per cent in the young-old (60-64); 42 per cent in the middle-old (65-69); 51 per cent in the older-old (70-74) and 61 per cent in the oldest old (75 and above).

No safety Net

The absence of a safety net for the elderly has exacerbated the problem. Traditionally, the joint family in India took care of its elderly. These traditional care arrangements have been lost in the context of rapid urbanisation and an exodus of people from rural to urban areas and from urban areas to foreign countries.

In the absence of such community support in the form of kinsmen or the extended family, and an inability to continue to earn their living, the elderly are often rendered destitute, if not financially, from a pragmatic perspective. While these problems plague most traditional societies that are in transition, their rapidly enlarging scope and scale, demand and necessitate an urgent response from our policy makers.

The Government India, supported actively by civil society, unveiled its National Policy on Older Persons (NPOP) over 50 years after Independence. A comprehensive document covering every aspect of the elder’s life, ambitious, with a clear cut action plan, it proposed a role for the State in the elder care: health, shelter, financial security and protection against abuse. It recognised the need for affirmative action favouring the elderly, viewing them as national resources, creating opportunities for their development. Training, empowerment and partnership with elderly were seen as important in providing equality and dignity to all groups of elderly.

Unfortunately, a decade later, the NPOP awaits complete implementation in all States and Union Territories of India, much of its promise remaining unfulfilled, prompting the Government of India to seek its revision to suit contemporary needs.Discussions among civil society groups and concerned senior citizens in the run up to a re-organised NPOP, reveal many consensus points for the future organisation of elder health care. There is little doubt that the care of the elder must remain vested within the family unit and based within the community the elder resides in. Incentives for families that care for their elders are necessary; as are the development of community health-care resources; doctors, nurses and paramedics specialised in elder health care; and rehabilitation facilities for those with disability. The importance of Government and civil society partnerships needs to be underscored here; as is regulation of such elder health-care services for quality and cost. While the focus is often on in-patient (hospitalisation) care, there is a clear need to develop other models relevant to the elder: out-patient care, day care, palliative care, rehabilitation care, respite care and step down care. Developing community level health-care worker pools that will both screen the elderly for risk factors, disease and disability; and provide simple home based interventions is necessary; as is tiered access for the elderly to a range of professionals: from generalist to specialist doctors. Most importantly, perhaps, those working in this area feel the need for unitary, sustainable and replicable models of screening and assessment: health checks that would address apart from routine risk factors like hypertension and diabetes, areas of potential disability: vision, hearing, falls, bone and joint, respiratory and cardiac disability; and neurodegenerative disorders — strokes, Parkinson’s disease and that looming public health challenge; brain degeneration and dementia!

The five ‘A’ test

A second area of concern for those engaged in this sector is that of healthcare costs. A survey in 2001 revealed that nearly two-thirds of elders live in rural areas; nearly half are women, out of whom over half are widows. Two-thirds of all elderly persons are illiterate and dependent on physical labour; 90 per cent existed in the unorganised sector with no regular source of income; one-third living below poverty line. In sum, the majority of Indian elders are in potentially vulnerable situations without adequate food, clothing, or shelter. Providing health care that passes the “Five ‘A’ Test” (Availability, Affordability, Accessibility, Acceptability and Accountability) to such a large vulnerable group, is a challenge that has to be confronted. Insurance cover that is elder-sensitive is virtually non-existent; insurance premiums increase in an unsustainable manner with age and there is rampant age-discrimination in the health insurance sector. Further, pre-existing illnesses are usually not covered, making insurance policies unviable for the elder. Indeed, senior citizens point out that they pay far more for health insurance than their utilisation justifies; and that elders end up subsidising the care of younger citizens, who form the bulk of health insurance consumers. Government sponsored comprehensive cover for those living below poverty line, and in elderly and destitute homes is necessary; as is family based insurance cover that addresses comprehensively, the unique health care needs of the elder.Most importantly, perhaps, is the need for sensitivity and sensibility in making these plans. The elder citizen is a national treasure; one who has contributed to both national growth and familial development. As they approach the autumn of their lives, they experience diminishing ability to generate income, increasing vulnerability to illness and disability, and increasing dependency on their families and communities. Rather than view this dependence as a burden to be endured, we must as a society embrace it whole-heartedly, as a pay back opportunity; to thank senior citizens for their many unconditional contributions. The organisation and delivery of elder health care must therefore be approached with enthusiasm, altruism and generosity. Mature health policy for the elder combined with a generous dose of pragmatism in organising, delivering and funding health care services is the need of the hour.

World Alzheimer’s Day has just passed — September 21, 2010, and we should be reminded about the challenge of population ageing; the looming burden of elder disability; and the need for a comprehensive and pragmatic National Policy for Older Persons.Acknowledgements: Mr. K.R. Gangadharan (Chair), Prof. Indira Jaiprakash (Member), and other members of the sub-committee on Healthcare of the NPOP for their inputs.

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Dementia Dementia & Memory Loss Elders Expert Blogs Featured

Dementia: A Looming Threat

Photo Credit: The Hindu: N Sridharan

A low level of awareness about dementia is most often why diagnosis is delayed and public health consciousness remains poor.

World Alzheimer’s Day (September 21) was marked this year, in India, by the release of a comprehensive Dementia India Report. Prepared by national experts, converging under the Alzheimer’s and Related Disorders Society of India (ARDSI) umbrella, it estimates that there are 3.7 million elderly currently living with dementia in India, each spending Rs. 43,000 per annum on medical care. Dementia mainly affects older people, although about two per cent of cases start before the age of 65 years. After this, the prevalence doubles every five years with over a third of all people aged 90+ years being affected. With the exponential increase in the population of the elderly (60+ years) in India, an estimated 100 million today, expected to rise 198 million in 2030 and 326 million in 2050, dementia poses a looming public health challenge, the enormity of which cannot be underscored. The report thus addresses a felt need among professionals, policy makers, dementia sufferers and their families.

What it is ?

Dementia is a neuropsychiatric disorder in which memory and other cognitive functions like thought, comprehension, language, arithmetic, judgment and insight deteriorate progressively.

While it increases in prevalence with advancing age, it is not a normal feature of ageing, a common misconception. Further, dementia is a clinical syndrome, one with many underlying causes, some potentially treatable. Of the many conditions that cause dementia, Alzheimer’s disease (AD) associated with neuro-chemical decline and waste product accumulation in the brain; vascular dementia (VaD) associated with strokes; dementia with Lewy bodies (DLB), a condition associated with Parkinson’s disease; and frontotemporal dementia (FTD), are most common.

The treatable conditions that cause dementia include infections such as syphilis, HIV and tuberculosis; hypothyroidism and other endocrinal problems; vitamin B12 and folic acid deficiency; toxic conditions of various kinds and so on. As they are potentially reversible they need to be addressed swiftly.

What the report highlights ?

The report highlights two areas of great import for dementia sufferers and their families: activities of daily living (ADL) an important measure of the human condition, and behavioural and psychological symptoms associated with dementia (BPSD), an important predictor of health related quality of life (HRQoL). Problem behaviours in dementia include agitation, aggression, calling out repeatedly, sleep disturbance, wandering and apathy.

Common psychological symptoms include anxiety, depression, delusions and hallucinations. BPSD occur most commonly in the middle stage of dementia and are an important cause of caregiver strain. They appear to be just as common in low and middle income countries as in developed ones.

The report outlines the current evidence based pharmacological treatments for dementia, especially AD and VaD: cholinesterase inhibitors (donepezil, rivastigmine, galantamine); NMDA agonists (memantine); drugs for BPSD (SSRI’s for depression and anxiety; new antipsychotics for psychotic symptoms like agitation, aggression, hallucinations; antiepileptic drugs that serve as mood stabilising agents); addressing also their cost-benefit in low-middle income countries. It also lays stress on the importance of structured caregiver interventions as part of standard treatment including psycho-educational interventions for dementia; psychological therapies such as cognitive behaviour therapy, cognitive retraining and family and caregiver counselling; as also caregiver support and respite care. Highlighting that caregiver interventions have been conclusively shown to delay institutionalisation of the person with dementia in the developed world; it observes that many new treatments in advanced stages of research hold promise for persons with dementia and their families.

The report differentiates risk factors into those that are non-modifiable (genetic factors for example) and those that are potentially modifiable. It highlights the extensive and evolving medical literature on the role of lifestyle diseases: diabetes and insulin resistance; high cholesterol levels; high blood pressure; increased fat intake and obesity; together the so-called metabolic syndrome as a modifiable risk factor for dementia. It is important that policy makers recognise these factors as targets for both primary (early) and secondary (after the onset) risk factor prevention. It points to the low level of awareness about dementia as an important reason why diagnosis is delayed and public health consciousness remains poor.

Worryingly, it observes that the lack of awareness extends to health professionals, formal training in dementia diagnosis and care not being a part of most medical, nursing and paramedical curricula; a matter of great concern needing immediate remediation. That stigmatisation of persons with dementia is rampant and that there is a need for raising awareness about the condition across segments of society is explicitly stated.

In India…

Assuming incremental life expectancy and a stable incidence of dementia, the report attempts to estimate the future burden of dementia both nationally and State-wise.

A twofold increase in dementia prevalence to 7.6 million by 2030 and a threefold increase to over 14 million by 2050 are thus estimated. Interestingly in the State-wise estimation, Delhi, Bihar and Jharkhand are all estimated to witness a 200 per cent or greater increment in dementia cases.

These figures have of course been calculated based on certain assumptions. When one factors in the significant disability that dementia confers on the affected person, estimated as being greater than any other health condition except severe developmental disability, the impact of this exponential rise in prevalence, even put mildly, is staggering. The report addresses the need for services to be developed: memory clinics, day care, residential care, support groups and helplines, pointing out the paucity that currently exists. Also highlighted is the severe paucity of human resources for dementia care.

A number of short-term and long-term focus goals, to improve resources; as well as scope, scale and quality of care are proposed.The report concludes with several key recommendations. The most important of these are:

  • Make dementia a national priority
  • Increase funding for dementia research
  • Increase awareness about dementia
  • Improve dementia identification and care skills
  • Develop community support mechanisms
  • Guarantee caregiver support packages
  • Develop comprehensive dementia care models
  • Develop new national policies and legislation for people with dementia

While these recommendations do address the need for dementia to be integrated into the National Policy for Older Persons (NPOP), they predominantly highlight the specific needs of dementia as a disabling and common condition among the elderly; one that can and will challenge Indian public health systems. However, the report acknowledges that dementia must be viewed in the context of other elder health problems, and within the framework of the NPOP.

Sets a gold-standard

Perhaps the greatest contribution of this Dementia India Report is in its setting a gold-standard for other disorders of ageing: quantifying the prevalence and burden of the condition; its impact on the sufferer, caregiver and society as a whole; the framework of services required in order to give succour and solace to sufferers and their families; the causes, risk factors, treatments and management models; and the State-wise national impact.

One fervently hopes that it will facilitate a powerful and futuristic policy response from the powers that be. In a country where the average age of the parliamentarian clearly falls in the “elder” category, one can only hope that it will be welcomed and adopted with the enthusiasm it richly deserves.Acknowledgements: Dr. K Jacob Roy, National Chairman of Alzheimer’s and Related Disorders Society of India (ARDSI) for permission to present this summary of the report and the use of figures.

Facts: 

  • There are 3.7 million elderly currently living with dementia in India, each spending Rs. 43,000 per annum on medical care
  • A twofold increase in dementia prevalence to 7.6 million by 2030 and a threefold increase to over 14 million by 2050 are thus estimated
  • Many new treatments in advanced stages of research hold promise for persons with dementia and their families

With the exponential increase in the population of the elderly in India, the disorder poses a challenge to public health systems.

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Dementia Dementia & Memory Loss Elders Expert Blogs Memory Problems

Perspectives in Dementia Care and Health Policy

A health policy for dementia should be comprehensive, especially spelling out the role of family, community and government.A brainstorming session on future perspectives in dementia care and health policy, at the National Dementia Summit held recently in New Delhi, is most insightful. The key prompts for this interactive session are simple and follow a 5W1H management model — who, what, why, when, where and how, in Rudyard Kipling’s “six friendly men” mould. We begin by asking who should take part in developing public policy. The large number of stakeholders becomes apparent: apart from Government, civil society agencies, medical, nursing, paramedical and other professionals, university faculty and researchers and those engaged in the care of dementia; the person affected (if able), their caregivers and families, clearly should all have a say in health policy development. Other stakeholders include the insurance sector, private care providers and agencies rendering dementia related services — pharmaceutical, nutraceutical, medical instrumentation industries; hospitals, hospices and homes. There is unanimity on whom health policy should target; everyone affected by the condition regardless of their economic or social

Photo Credit: The Hindu : N. Sridharan

circumstances.Prevention of Risk FactorsWhen should dementia health policy become operational (at what point of time in the lifespan) we ask. The discussion among experts is animated. They point out that primary prevention i.e. the prevention of risk factors that increase the likelihood of dementia development: hypertension, obesity, high lipid factor levels and diabetes; smoking and alcohol consumption; should begin young, perhaps even in teenaged years. These being the risk factors for many chronic and lifestyle diseases, the benefits of such primary prevention will undoubtedly go far beyond dementia, to a host of other chronic and lifestyle diseases. Secondary prevention, the optimal management of risk factors once they have developed, usually begins in middle age, when risk factors surface and are first detected in individuals. Tertiary prevention, early diagnosis of dementia, even in the mild cognitive impairment stage, often mistaken to be part of normal ageing; the early treatment with drugs that can slow down the disease; and supportive interventions for the caregiver, is universally believed to be mandatory. The group is unanimous that the time for a well defined national health policy is now, when there are an estimated 100 million elders in India, 3.7 million of whom are believed to have dementia.Participants believe that a health policy for dementia should be comprehensive and cover standards for diagnosis, treatment, clinical management; spelling out clearly the role of the family, community and government. Aside from this, dementia requires considerable care, which goes far beyond cure: rehabilitation care, respite care and palliative care, all of which must be clearly outlined. Dementia is a condition with many ethical, legal and financial implications that need to be addressed; and is also the focus of much research. Participants feel strongly that such health policy development should be inclusive and bottom-up, assimilating inclusively the views of all stakeholders; not top-down, based on the views of a minority who have access to the corridors of power. International delegates point out that there is evidence today that the bottom up approach to policy making is far more likely to work that the top down one. In this context participants express their regret that much of health policy development in India remains top down, with stakeholders being seldom consulted.Discussing the focus of a health policy, there is general agreement that all essential domains of dementia care need to be addressed: thus the person, family especially the principal caregiver and community health resources all need importance. However, given dementia’s inherent nature, a disabling condition with complex medical and social needs, secondary care, even tertiary care, cannot be avoided at times of diagnosis; for management, both drugs and non-drug therapies; and complications. At the same time rehabilitation care, both in-patient and out-patient, needs emphasis. When asked to choose between these different domains of care, putting focus on one, participating experts and stakeholders are unanimous; the person, his family and the community resources they can leverage upon are a paramount focus of health policy development.We proceed to ask “who should do what?” for the person with dementia. Interestingly, the need for co-operation and partnership between government, civil society, private providers and affected families becomes immediately apparent. The government clearly has to lead on making dementia a national priority, guaranteeing support for the caregiver and developing new dementia policy and legislation, all of which need immediate and timely action. On the other hand civil society support groups and care providers clearly have their work cut out for them taking ownership for tasks like increasing awareness in the community, improving dementia identification and care skills, and developing community support systems. The development of comprehensive care-giving models will require the involvement of experts: universities and tertiary facilities, working in tandem with affected families. Research is seen as one area where all parties need to take part. The government must increase funding for dementia research; pharmaceutical agencies and industry must contribute their mite; as must universities and other academic agencies; civil society supporting and enhancing the process; families participating with enthusiasm and altruism.The development of dementia health policy, as it has unfolded here, is by no means unique to that condition. The majority of chronic diseases, a rising burden in India today, will require a similar approach: paradigms that address long term care (when cure is not an option); participation and co-operation among a range of agencies, often as different from one another as chalk is from cheese; and inclusive, bottom up health policy development. While a nodal national agency charged with this responsibility will probably be part of the answer, this discussion on dementia brings to the fore, an urgent felt need in this country, for health policy paradigms that will address the emerging epidemic of chronic and lifestyle diseases. Isn’t it time our policy makers and Kipling’s six friendly men, met?

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Bipolar Disorder Dementia Elders Expert Blogs Featured

Food for Thought

A healthy diet and lifestyle can stave off memory loss.Dementia is a disorder of brain aging caused by a range of factors: degeneration of chemical systems in the brain; accumulation of waste products; diminishing blood perfusion leading to many small areas of damage (microvascular infarction); and several other causative factors.Prevention assumes great significance in this era of chronic and lifestyle diseases; with hypertension, obesity, lipid disorders (high cholesterol) and diabetes (HOLD) being rampant in society. Nutrition underpins both HOLD and dementia.It is well known that sub-clinical deficiency in essential nutrients can lead to dementia. Research has shown memory deficits in people with low plasma levels of vitamin B 12, folic acid, lycopene, a-carotene, b-carotene, total carotene, b-cryptoxanthin, a-tocopherol etc.

There is mounting evidence for the Mediterranean diet — high consumption of olive oil and fish, hence elevated intakes of monounsaturated fatty acids and v–3 polyunsaturated fatty acids — being protective against age-related cognitive decline. The antioxidant compounds in olive oil (tocopherols and polyphenols), and fatty acids may help maintain the structural integrity of nerve membranes. The naturopathy food pyramid is a good indicator of what we should eat in order to remain healthy and prevent dementia.There is no doubt that red wine consumed in moderation may be beneficial, reducing bad cholesterol, preventing blood clots and protecting the heart. The protection may come from the constituents of red wine made from tannin grapes, which include procyanidins, a class of flavonoids also found in plants, fruits and cocoa beans. Thus moderate red wine consumption maybe good, but only when accompanied by a “healthy” lifestyle.There is growing evidence that vitamin supplementation has a significant role to play in lowering the risk of dementia. Evidence for vit C, E, B12 and folic acid — as supplements in higher doses — is particularly strong. Indeed, the US FDA has recommended folic acid fortification of foods, for example flour and bread. High vitamin levels due to inappropriate supplementation can, however, be problematic and must be guarded against.It has long been known that certain plant formulations — Brahmi (Bacopa Monnieri), Tulsi (Basil), Ashwagandha (Withania Somnifera), Curcumin (in turmeric), extra virgin coconut oil — may enhance memory function and these are subjects of active research. Evidence to support over-the-counter plant formulations is, however, not available.A well-preserved memory is the cornerstone of a good life; good nutrition and a healthy lifestyle will help us achieve this milestone. To paraphrase the great bard, do we not desire to avoid or at least postpone our “sans everything” years?

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Elders Expert Blogs

Beyond Medication

Modern medicine cannot, on its own, address the care needs of several hundred thousand people confined to their beds and to wheelchairs, due to illness and injury.

Nothing strikes greater fear in our hearts than the prospect of permanent medical disability. Sadly, with humans living longer (but not necessarily healthier) lives, multi-morbidity and chronic medical disability have become common. When struck down by disability, the prevailing medical model provides both for surgical correction and symptom relief through drugs and procedures. However, with a large proportion of patients either failing to respond adequately, or indeed rejecting those conventional options, there is a need to look beyond.Mrs. L, an 80-year-old housewife, was rushed to the hospital after suffering a brain haemorrhage.

Unconscious, paralysed on the left side, unable to speak and swallow, she needed ICU care with the ventilator (and tracheostomy) to help her breathe and a feeding tube to receive fair nutrition. Three weeks later, when she was transferred to rehabilitation care, Mrs. L was barely conscious; still had a tracheostomy tube, feeding tube and catheter in place, remained severely paralysed on the left side (not even a flicker of muscle contraction), and suffered from excessive throat secretions and severe chest congestion.

After a comprehensive assessment by the rehabilitation physician, with inputs from the chest and ENT physician, her medication was optimised and intravenous steroids to kick-start brain function were introduced. She also received an integrative therapy programme, including twice daily sessions of physiotherapy in the form of nerve and muscle stimulation, graded passive and active exercises, combined with manual interventions such as acupressure, acupuncture and reflexology. Over two weeks, Mrs. L responded well to this treatment. Her consciousness and comprehension improved, and she began to respond to and obey simple commands. She began to sit with support, and then her chest secretions reduced. She regained urinary sensation and gradually her catheter was removed. She started to show response in the paralysed limbs; she stood with support; even walked a few steps. However, there was persistent left vocal cord palsy and the tracheostomy removal failed. So the feeding tube had to be left in place. We started work with her family, helping them cope with her condition and setting graded, realistic goals.She was discharged to home care and nursing and continued to undergo integrative therapy. Sessions of Ayurveda therapy in the form of oil massages and medicated foments were now introduced to improve limb power and movement along with continued physical and manual therapy procedures. The psychological therapist engaged her in cognitive therapy and motivational enhancement, apart from helping her caregivers deal with their distress. Over six weeks, she began to walk with support, express herself with gestures and swallow small amounts of soft solids. Apart from a minor bout of aspiration pneumonia in the interim, requiring brief hospitalisation, she made good progress.When Mrs. L returned to the hospital for a team review, her tracheostomy tube and feeding tube were removed. She regained her ability to speak, albeit hoarsely. Her chest was clear and she was progressively able to swallow more each day. Her gait had improved and she walked well with support. She appeared bright, sprightly and ready to engage with the world, even presiding over her family’s “harvest festival” celebration. Today, this determined lady continues weekly sessions in the pursuit of complete wellness.Mrs. L’s is an inspirational story. While modern medicine saved her life, it could not possibly, on its own, give her back “quality of life”. The integration of several medical therapies, as a rehabilitation model, succeeded in doing just that. Involving the use of trained personnel and a range of techniques and therapies — both ancient and modern — have great relevance in our culture. Modern medicine at the fountainhead of such treatment is crucial, not least because people with medical disability are especially vulnerable and need close scientific supervision. However, modern medicine cannot, on its own, address the care needs of several hundred thousand people confined to their beds and to wheelchairs, due to illness and injury. With an estimated 125 million elderly in India, slated to grow to 176 million by 2026, 30 per cent of whom have chronic medical conditions, we must clearly look beyond, at holistic care.

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Bipolar Disorder Elders Patient Stories

Falling men, Failing Neurons

Clinical Autonomic Dysfunction with a plethora of systemic complaints often goes unrecognised. But the right diagnosis and treatment can help speed up the recovery process.

Most of us take standing up for granted. Only when we cannot stand for some reason are we reminded of its importance. Oliver Sacks, the legendary neurologist and author, addressed this rather poignantly in his story On standing on one leg, which documented his experiences after a fall in the Alps. The human species started ‘standing on two legs’ rather late in its evolution. As a consequence, body mechanisms that enable standing — for example ‘preventing all the blood from pooling in our feet, thanks to gravity’ — developed rather late. A complex neural network rich in chemicals and hormones controls postural changes in blood pressure, as it does heart rate, body temperature, digestion, urinary and sexual function… a host of human activities performed, often unthinkingly. This complex network — the autonomic nervous system or ANS — is ‘autonomic’ i.e. ‘independent’ of our conscious control, yet to some extent modifiable. For example, we can hold our urine until we reach the bathroom, well, most of the time!V, a 64-year-old retired headmaster, came to us with a rather peculiar problem. For almost a year, he had been unable to stand up. He would collapse and transiently lose consciousness. Starting with giddiness on standing up, the problem had progressed to intolerable vertigo and eventually episodes of syncope (fainting), leaving him most comfortable when flat on his back. Not surprisingly, V had taken himself to bed, occupying supine repose, in which he was most comfortable. Not surprisingly also, this rendered him severely disabled, dependant on his wife of almost four decades, for all activities of daily life.

When we first met V, he was petrified of standing up, even with our persuasive encouragement and promise of medical support. We had to, therefore, admit him to a partner hospital, and begin attending to him there. Our detailed 360° evaluation confirmed that he had a rare but disabling condition — progressive autonomic failure — with the background of long-standing depression, under treatment with psychotropic medication and a history of generalised seizures (in remission). He had many symptoms of clinical autonomic dysfunction: his blood pressure when taken lying down was 90/50 mmHg; when he stood up, however, his blood pressure plummeted to 50/? — the diastolic so low that it was unrecordable. His postural vertigo, variable heart rate, altered patterns of sweating, pain in the neck and shoulders (coat hanger distribution), unpredictable bowel movements were all symptomatic of his underlying condition: Clinical Autonomic Dysfunction. In addition V had slurred speech and diminished swallowing ability without apparent neuromuscular weakness.

Following diagnosis, V was started on one of the few drugs that can help prevent postural fall in blood pressure. He also was enrolled into our interdisciplinary and integrative rehabilitation programme for autonomic dysfunction. Extended physiotherapy sessions including passive mobilisation, electrotherapy for pain, postural exercise paradigms, gait and balance training, and active exercise protocols delivered over three weeks. He also received acupuncture targeting his neurological symptoms and therapeutic mud for his gastro-intestinal symptoms. Sessions of Jacobson’s Progressive Muscle Relaxation as well as supportive counselling to build confidence and motivation and address caregiver distress were included. At the end of the treatment period, aided no doubt by both drug and alternative therapy approaches, V was back on his feet.

Clinical Autonomic Dysfunction with a plethora of systemic complaints often goes unrecognised as a medical diagnosis; so little being known about ANS and it being difficult to test. Many patients with autonomic symptoms are labelled as ‘psychosomatic’ and do not receive necessary medical attention, leading to avoidable delays in treatment. Indeed the ANS is perhaps one of the last frontiers of neuroscience, requiring significant research focus, as concluded in the recent TS Srinivasan-NIMHANS Conclave on the subject. Not just neurological and psychiatric, ANS symptoms can present with vertigo (ENT), cardiac (heart), respiratory (lungs), gastroenterological (abdomen), genitourinary (urinary and sexual), orthopaedic and rheumatology (bones, joints, musculoskeletal) complaints. A clinical diversity that can test the most accomplished physicians. While falling men like V could well have failing neurons, we also learn from him that people with a plethora of unexplained medical symptoms do deserve an ‘autonomic’ approach and may well benefit from therapy and rehabilitation.

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