Category: Dementia & Memory Loss

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.

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

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?