Living with Alzheimer’s
India must be prepared to deal with a disease that is growing globally
Dementia is currently under-detected, under-diagnosed, under-disclosed, under-treated and under-managed in primary care.
Frantic 5 AM calls from a neighbour desperately seeking help as her 75-year-old father walked out of a Kerala-bound train when it halted at Coimbatore, filled the mind with dread at what could have happened had he not been found. The neighbour was lucky. Social media helped. Two days later the daughter was reunited with her Alzheimer’s-affected father. She now locks him up at home before setting off for work.
From putting a wristwatch in a sugar bowl to spectacles in a glass, buying mutton instead of fish to eventually uttering incomprehensible sentences, losing one’s memory is a painful process. The World Alzheimer Report 2016, that reviews healthcare for dementia around the world, finds 47 million people live with dementia worldwide, more than the population of Spain. A global voice on dementia, Alzheimer’s Disease International (ADI) released a report in September, finding that currently, only half have received a diagnosis in high-income countries, and less than one in ten in low and middle income countries. This number is projected to increase to more than 131 million by 2050 as populations age, predicts Martin Prince of the Global Observatory for Ageing and Dementia Care who, in collaboration with the Personal Social Services Research Unit (PSSRU) at the London School of Economics and Political Science (LSE), authored the World Alzheimer Report 2016.
Dementia is currently under-detected, under-diagnosed, under-disclosed, under-treated and under-managed in primary care. In the Indian Journal of Psychiatry, experts listed nearly 1.5 million people living with dementia in 2009. The rate of increase was estimated to be three to four times higher in developing countries than developed countries. As per estimates, India has about 4.1 million persons (3.7 million persons as per Dementia India Report, 2010) with dementia. The latest ADI report paints a grim picture as numbers in the Asia Pacific region suffering from dementia are set to rise to 71 million in 2050 from 23 million in 2015. India is second to China, with over 12 million persons likely to be affected.
Even when dementia is diagnosed, care provided is often fragmented, uncoordinated and unresponsive to the needs of people living with dementia. In fact, the estimated worldwide cost of dementia is $ 818 billion and it’s set to be a trillion-dollar disease by 2018. The conservative cost of the estimate is pegged at Rs 14,700 crore by the Alzheimer’s and Related Disorders Society of India (ARDSI), which earlier published a country status report on dementia. The numbers are expected to double by 2030 and the cost of care would estimatedly increase three times.
A new report of the Global Burden of Disease (GBD) 2015 published in The Lancet suggested that the number of individuals with Alzheimer’s increased from 21.7 million worldwide in 1990 to 46 million in 2015. The rapid increase points to the major challenge dementia presents to societies with increasing life expectancy. The GBD international collaborators admit the number is similar to recent estimates from the World Alzheimer Report which counts about 46.8 million people living with dementia in 2015.
For people 60 years and older, several causes, including ischaemic heart disease, chronic kidney disease, diabetes, hearing loss and Alzheimer’s ranked among leading causes of disability adjusted life years (DALYs — a gap measure to represent the sum of years of life lost due to premature mortality and years lived with disability) in 2015. Alzheimer’s jumped the ranks to occupy the 29th leading cause of years of living with disability in the world. It ranked 49th in 1990 and 37th in 2005.
A small number of persons with dementia access private health services due to unsatisfactory public services. Home-based care is the best but the burnout of caregivers is an important issue. While Kerala played a leading role in recognising dementia as an issue that needs a specific health strategy apart from general geriatric care, and set up a state-run day care centre for dementia-affected persons, much more needs to be done.
Tom DeBaggio, an American author diagnosed with Alzheimer’s, tells readers in his book Losing My Mind how it would be foolish to think one could escape the traps of ageing. Closer home, filmmaker Amol Palekar, after the release of the Marathi film Dhoosar (blurred), exploring a mother-daughter relationship as dementia affects the former, said, “None of us knows whether some day we will also be affected by this dreadful disease.”
On a positive note, there is a growing list of countries developing national dementia plans. Hopes are being raised about adoption of a Global Plan on Dementia by the World Health Organization in 2017. India’s young too are ageing and like never before, we need to solemnly pledge to remember those who cannot remember.
Anuradha Mascarenhas is a Senior Editor at The Indian Express, based in Pune. With a career spanning... Read More
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