The persistence of memory: The burden of Alzheimer’s disease in India

Between 2001 and 2011, India’s elderly population increased from 70 million to 104 million (Census estimates). In 2011, the population over 60 years of age comprised 8.6% of the total population. With falling population growth rates this share is only expected to increase further in the coming decades. As the population ages, the burden of geriatric diseases will start to feel heavier. Of all the geriatric diseases, India is perhaps most underprepared to tackle the burden of degenerative diseases like dementia (memory loss). This is due to a lack of awareness compounded by a dearth of specialists in geriatric diseases.

Alzheimer’s disease is the most common form of dementia characterised by progressive degeneration of cognitive abilities. Its symptoms range from forgetfulness in its early stages to loss of speech and immobility in its late stages. However, Alzheimer’s differs from other geriatric diseases in that its early symptoms are often confused with that of old age and its onset is often missed. According to the Dementia India Report 2010 by the Alzheimer’s and Related Disorders Society of India (ARDSI), there were around 3.7 million Indians with dementia in 2010 with the number projected to rise to 7.6 million by 2030. A general awareness about Alzheimer’s disease remains low throughout the country and even lower in rural and underdeveloped areas. There is an urgent need to increase awareness about dementia in general, and about the early symptoms of Alzheimer’s disease in particular. Family members and primary care physicians are best placed to recognise these early symptoms and hence, a national awareness campaign targeted towards them is likely to have the most effect.

Even within the field of medicine, research in dementia and related diseases remain low. Most of our existing knowledge and estimates of the incidence of dementia come from small regional case studies. Similar to the burden of other non-communicable diseases, there is likely to be considerable heterogeneity across the states in the prevalence of dementia brought about by lifestyle and food habits. A thorough pan-India investigation into the current incidence and burden of dementia and Alzheimer’s is the need of the hour. There is also a need to provide genetic testing services for the Alzheimer’s gene (APOE-e4) and fund clinical trials. For a disease like Alzheimer’s, whose risk-factors are genetic, lifestyle, and environmental, we need to conduct clinical trials specific to India and not rely on those conducted in developed countries. Better knowledge of risk-factors is likely to influence patients and family-members to seek healthcare early and allow physicians to detect dementia early.

Alzheimer’s disease imposes both economic and non-economic costs beyond that on the patient as family members still provide the bulk of the caregiving. The ARDSI 2010 report estimated the total societal costs from dementia to be 147 billion INR in 2010 with a projected threefold increase by 2030. In addition to direct cost of treatment e.g. cost of medication and physicians, the bulk of these economic costs stem from informal care through loss of wages and income through absenteeism from work or withdrawal from labour force by family members. Long-term care also imposes a psychological toll on the caregiver. In the absence of reliable formal care facilities, the burden of care is borne disproportionately by women. Thus, there exists an untapped market for reliable institutional care – both short-term and long-term care for Alzheimer’s disease patients. The establishment of care centres will transfer the burden from the family members to trained professionals as well as lead to job-creation. This would obviously require substantial investment up-front on training healthcare workers to recognise and cater to the needs of dementia patients. The National Program for Health Care of the Elderly under the Ministry of Health and Family Welfare aims to bridge some of the gaps in the landscape of geriatric care in India through the setting up of Regional Geriatric Care Centres. However, a focus on dementia and Alzheimer’s disease is missing. Currently this gap is being filled by NGOs such as ARDSI who provide certification courses on dementia care. With an increasingly aging population, investments made in training healthcare professionals is likely to pay for itself as demand for these services is only going to increase.

If India is to stay ahead of the curve and prepare for the needs of an aging population, a clearly defined public health strategy with a significant focus on research into degenerative diseases and investment in the training of healthcare personnel is much needed.