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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 ProblemsStudies 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 NetThe 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’ testA 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: 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-standardPerhaps 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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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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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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The Whole Picture – Epilepsy Care and Management

A therapeutic alliance and an interdisciplinary approach work well for patients with epilepsy.

In over 85 per cent of cases,
epilepsy can be treated successfully.

Epilepsy was once considered a manifestation of gods, demons, spirits and their disaffection with humankind. Its treatment in ancient times involved a range of rituals and exorcisms. In the 19th century, as medical science evolved, epilepsy came to be regarded as a disease of the brain but continued to be associated closely with the mind and was often treated in asylums by doctors, who were as concerned with mental illness as they were with epilepsy.In the first part of the 20th century, clear associations between the mind and epilepsy began to emerge from patient settings. That behaviours could be a manifestation of underlying epilepsy (epileptic equivalents), precede a seizure (aura or warning), and follow seizures (post-ictal states) all became part of neurological lore. That psychological states (hysteria) could manifest with seizure-like episodes, ‘psychogenic seizures’, or ‘pseudoseizures’ also were described. Anxiety, depression, psychosis, obsessions, hysteria… a wide range of mental states being a prelude to seizures, accompanying silent seizures, or following seizures were described by European neuro-psychiatrists. However, despite this rich medical literature of over two centuries, the relationship between epilepsy and the mind remains much misunderstood as also the treatment of disorders thereof.Fourteen-year-old Miss V, with a childhood history of febrile seizures, suffered from repeated episodes of jerking and being ‘absent’ that tended to cluster around her menstrual periods. She also had falling academic grades, mood swings, anxiety, disturbed digestion and poor sleep. A good student whose childhood epilepsy had been well controlled, she was bemused by the sudden outbreak of symptoms around menarche that had over a year substantially reduced her quality of life.Consultations with an array of specialists and close observation by her intelligent and attentive parents led to the understanding that the problem was not easily responsive to conventional medication; was closely linked to stress, both academic and familial; clustered around her menstrual periods; was unpredictable and at times subtle (a jerk or two while on the dining table that could otherwise pass off as a teenage mannerism); could affect her on several days in a month. Indeed, her father, a diligent record keeper, could identify as many as 50 to 60 events in a given month occurring in five to six clusters.A comprehensive care approach for such a patient would comprise:A detailed interdisciplinary history: general medical, menstrual, neurological, psychiatric, developmental, social, familial and nutritionalA detailed treatment history: drugs, doses, side-effects, impact of treatment. Investigations to exclude co-morbidities and complications.Establishment of a therapeutic alliance with the family: A firm commitment to work together with transparency, mutual respect and common goals.An interdisciplinary therapeutic programme: nutritional and medical, psychological counselling, yoga therapy, naturopathic and Ayurveda therapies for digestion, sleep and peri-menstrual symptoms.A carefully graded approach to drug treatment of epilepsy with commitment to identify the ideal drug combination and the therapeutic window thereof.After a similar approach for Miss V, one year later it was found:Episodes diminished from 50 to two to three a month.Attacks were brief and had limited impact (a couple of hours at best).Peri-menstrual periods were bearable.Mood swings and anxiety had remitted; sleep and appetite improved greatly; stress levels fallen.Is compliant with medication and regular; tolerated her drug doses well.A therapeutic alliance and interdisciplinary approach (a recommended global best practice model of epilepsy care*) appear to have worked. Miss V is firmly on the road to recovery.FAQsWhat is epilepsy? A short circuit in the brain’s electrochemical activity is a seizure. A tendency to have unprovoked seizures is epilepsy.What causes epilepsy? About 10 per cent of all patients have clear genetic causes. In others, brain trauma (in pregnancy or later life), infections (cysticercosis and tuberculosis), inflammations, tumours; brain scarring due to poor blood supply (ischemia) and degeneration contribute.Can epilepsy be treated? In over 85 per cent of cases, epilepsy can be treated successfully (either complete absence of seizures or a substantial reduction). A range of drugs, surgical treatments and brain stimulation procedures are available.Can a person with epilepsy lead a normal life? Certainly! People with epilepsy can study, hold responsible jobs, get married, have children, play sport and engage in social, cultural activities. Limitations if any are related to driving a motorised vehicle (law varies across countries), taking part in adventure sports, swimming without supervision etc.Can epilepsy be prevented? Epilepsy is not contagious. Prevention starts at conception with good maternal health and antenatal care. Good care of the newborn, appropriate nutrition, prevention of infections, head injuries especially road traffic accidents, early diagnosis and treatment of seizures are the cornerstones of prevention.What to do when a person has a seizure? Put them on their side comfortably (the recovery position), remove all dangerous objects (those that are sharp, emit heat etc.), provide a soft head rest; hold them gently until the event is over (seconds to minutes). Do not try and insert your hands into their mouth; do not hold them forcefully or try to interrupt the seizure. Giving them keys or metal to hold has no medical impact. If a seizure is prolonged, call an ambulance immediately.

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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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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.