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A report on the HelpAge India Media Consultation on Health and Ageing
April 5, 2012 Global Arts Village, New Delhi.
Introduction There has been a phenomenal increase in the elderly population in India, especially those over 80 years. In fact, by 2050, 15 percent of the country’s population are expected to be 80 plus. Even the
number of those above 60 will increase from the present eight percent to 21 percent of the population by that time. Twenty percent of them will suffer from Alzheimer’s (AD), a form of dementia that affects memory, thinking and behaviour. Growth of 80 Plus population
Need For Media Partnership With the number of people above the age of 80 rising in India, new health priorities and concerns have emerged. `Ageing and Health` was the World Health Organisation theme for World Health Day (April 7) this year. As the media plays an important role in reaching out to this vulnerable population, a half-day media consultation was organised in New Delhi on April 5 by HelpAge India, one of the oldest NGOs working for the elderly, to discuss issues related to the WHO theme particularly in the context of the new National Policy for Senior Citizens, 2011.
This new policy prepared by the Ministry of Social Justice and Empowerment and awaiting cabinet
approval, came about after the union government accepted representations from senior citizens associations that with the increase in life span, different health problems including chronic functional disabilities had to be addressed. The government appointed a committee in January 2010 to review the existing policy and recommend changes keeping in view the demographic trends and other social and economic factors. According to the 2001 census, there are 80, 38,718 who are over 80 years and about a quarter of them live in urban areas. With the joint family structure disintegrating, children migrating and Alzhemier’s on the rise, there are new concerns on the health, care and economic and social well being of this ageing population.
Health and Ageing
According to Mr Mathew Cherian, CEO, HelpAge India, Alzheimer’s disease (AD) was now seen as a major public health and social problem that was seriously affecting millions of older people and their families. In India, he said, the population with Alzheimer’s and related disorders was estimated to be around 3.7 million (2.1 million women and 1.5 million women) which was based on recent scientific studies.
Mr Cherian, who was a member of the Sub-Group instituted to propose changes, recommended setting up of National Centre for the Older Persons suffering from Dementia and Mental Diseases at New Delhi. They also recommended a budgetary allocation of Rs. 120 crore for the XII plan. Setting up National Helpline for Older Persons “Older persons were often victims of abuse, ill treatment, exploitation, desertion and violence. To ensure their dignity and security, they needed prompt and reliable support in times of need and distress,” said Mr Cherian. This is why the Sub-Group had recommended the following: (i) setting up National Helpline for Older Persons based on the model of ChildLine (ii) setting up of Helplines in each State to provide different types of services by joint effort of an NGO and the local police department (iii) setting up helplines in the premises of old age homes set up under the Maintenance and Welfare of Parents and Senior Citizens Act, 2007 Health Insurance for the Elderly The Sub-Group, said Mr Cherian, also felt that as they grow older, senior citizens were prone to diseases that require prolonged and expensive treatments. Therefore, it recommended that different insurance schemes could be devised depending on demand and preference of the families of the elderly persons with government subsidy for the benefit of underprivileged elders. In fact, to ameliorate the cost of medical care of elders, the Sub-Group recommended development of Health Insurance Schemes specifically for the older persons in consultation with Insurance companies. Economic Empowerment of Elders Another important issue said Mr Cherian was the economic independence of the elderly. “Most of senior citizens were physically fit to work and earn,” he pointed out. Thus, to facilitate employment opportunities, the Sub-Group recommended the following: (i) underprivileged elders without educational qualifications be taught income generation skills and production of simple consumer products and they are helped in marketing their products too. (ii) training in computer skills and orientation, as required in the present day job may also be imparted so that they are enabled to take up jobs with confidence.
(iii) a Centre for Economic Empowerment of Elders could be set up in every state capital which could identify potential employers and available job opportunities and facilitates suitable placements. Mr Cherian pointed out that for the first time the new policy focused on the “oldest olds,” a new term coined for those over 80. This is why the Sub-Group had suggested the setting of a National Centre for Older Persons suffering from dementia and mental diseases at Delhi. This had been included in the 12th Plan, he stated. Illness a Part of Ageing Illness would always be a part of old age pointed out Dr A B Dey, Dean Research, Professor Department of Medicine, Chief Geriatric Services, AIIMS. With the rapidly growing population of geriatrics, a serious health concern was Alzheimer’s and dementia, among others. But the problem was a lack of long term care facilities. At AIIMS, he revealed, patients were discharged after a maximum of seven days. Older people also need emergency care but socio-economic factors determined their access to the Emergency Department. “Even after reaching the Emergency, they may remain neglected, undiagnosed or discriminated when it came to getting a bed,” said Dr Dey.
Barriers to Healthcare for the Elderly Pointing the three major barriers to healthcare for the elderly, Dr Dey said that access to healthcare was a major factor. He revealed that they had studied 1600 older people admitted to then AIIMS casualty ward. When they reviewed their situation one year after going into emergency treatment, they found that 30 percent died after one month. Only 10 percent remained alive after one year. The problem was also exacerbated because only 17 percent of elderly were able to get a bed in the hospital. “The lack of medical infrastructure means that a younger person with a problem is given preference over an older person because his chances of survival are less. With access to healthcare being one of the biggest problems for the aging, dedicated health facilities were critical for their welfare. The solution lay in dedicated beds for older persons in all healthcare centres”, said Dr Dey. The second barrier was the cost of intensive care. “Since families want every possible care given, docs are pressurised to keep trying otherwise they are accused of negligence. This means more interventions and an increase in costs. But not many of the elderly could afford such high costs,” he said. The third barrier was the lack of proper caregivers. Dr Dey said that the drop out rate of treatment among the elderly was high because the older people were dependent on a family member to bring them to the hospital or other healthcare facilities and therefore unable to keep to their appointments. Only 10 percent of elderly belong to the upper class could pursue treatment, he stated. Government Plans for Dedicated Geriatric Wards So what would happen to the elderly living below the poverty line? “Since a majority of the elderly (80 percent) would be living in the rural areas and 30 percent of them below the poverty line, this would make service delivery a challenge,” said Ms Sujaya Krishnan, Joint Secretary, Ministry of Health & Family Welfare. She said that India was slated to become home to the second largest population of senior citizens in the world. Women would account for 51 percent of the elderly population which would increase to 12 percent of the total population by 2050. Ten percent of the elderly would be bedridden. The number of Indian above the age of 80 would increase more than six times from existing 78 lakhs to 5.14 crore by 2050 and 20 percent of them would suffer form AD, she pointed out.
There were seven states which had an elderly population of over seven percent. Kerala topped the list with 9.9 percent followed by HP (9.2), Punjab (8.6), TN (8.5), Orissa (7.7), AP (7.6) and Gujarat (7.4). While accepting the need for dedicated geriatric health are services, Ms Krishnan said that the major constraints for geriatric healthcare was the lack of specialized and trained manpower, zero dedicated healthcare infrastructure and the fact that geriatric was not yet a popular specialty. Sharing the government’s vision for the elderly in the XII Plan, she said many initiatives had been taken. Ms Krishnan said that the MoHFW had formulated a national policy for healthcare of the elderly to promote dedicated healthcare facilities for the elderly. This was formulated in pursuance to the National Policy on Older Persons (1999), Maintenance and Welfare of Parents and Senior Citizens Act 2007 and the Budget Speech of the Finance Minister (2008-9). The objectives of this policy was the provision of dedicated healthcare facilities for the elderly at various levels, training of manpower for geriatric care, strengthening of preventive, promotive and rehabilitative and promotion of research work in geriatric healthcare. Eight regional medical centres identified for these services including AIIMS, Delhi, Institute of Medical Sciences, Benaras Hindu University, UP, and Sher-E- Kashmir Institute of medical Science in Srinagar, J&K among others. These will have a 30 bedded geriatric ward, academic and research wing and a dedicated OPD for the elderly.
Ms Krishan said that in the first phase, 100 districts in 21 states would have geriatric units at even the primary health centres. Later this would be upscaled to all 540 districts at 100 districts a year. The number of geriatric centres would be increased to 12 and 100 Old Age Homes would be set up. However, this may take time as the Planning Commission had only approves a budgetary allocation of Rs 150 crore although they had asked for Rs 540.50 crore, revealed Ms Krishnan.. Laughter the Best Medicine Although money was important to take care of the elderly, laughter was the best and cheapest medicine, said Mr. MM Sabharwal, President Emeritus, HelpAge India.
“In 1947, there were not even one million people aged 80 and above. Now there are five to six million such persons. We are living longer because of advances in the field of medicine” said Mr Sabharwal, who just turned 90.
However, this longevity was accompanied by health problems which were not addressed by the existing policy. When Mr Sabharwal shared with Mr Mukul Wasnik, the minister for Social Justice and Empowerment, the urgent need to revise the policy for older people that had been formulated in 1999, the Minister immediately instituted a committee to draft the new policy. “This sea change in the country’s demographic and social profile had necessitated a new policy for older people. This is how the draft committee came into being,” he revealed. “I also suffer from a bad stomach, my legs are not strong anymore and my hearing has dropped. But I am living with it. We all have to. But we must do it with dignity. This is why the best place for elderly is to live with their family and not old age homes. Up to a certain age, the elderly are a resource. Thereafter become burden. But the family should carry this burden happily because the “oldest olds” are a vast resource of knowledge and experience that can be tapped,” stated Mr
Alzheimer’s, a Silent Tsunami According to Dr Manjari Tripathi, Additional Professor Neurology, AIIMS& Alzheimer’s & Related Disorders Society of India(ARDSI), President Delhi Chapter, said that although 50 per cent of those over 85 suffered from AD, three to four per cent of those over 65 also had Alzhemier’s. “Alzheimer’s is a silent tsunami for senior citizens as it results in chronic functional disabilities” she stated.
There were different kinds of dementia said Dr Tripathi. “Dementia was not just a problem of elderly but many suffering from hypertension also suffered from memory loss leading to dementia. This is a silent epidemic”, she pointed out. Unlike other health problems, dementia was not diagnosed easily. “You may not realise it until it is too late. However the risk factors for dementia was preventable. Factors like hypertension, diabetes, smoking, stress, eating preserved food and alcohol consumption could be controlled. We go out and buy disease. If we should look after ourselves, dementia can be prevented,” she stated. The Alzheimer’s & Related Disorders Society of India (ARDSI) had opened a day care centre for persons with dementia and AD. In addition, a 24 hour helpline and free medicines were also available. Dr Tripathi also collaborated with the National Brain Research Centre (NBRC) in identifying biomarkers that could detect early signs of Alzheimer’s. Ring the Bells, It May Open Doors The first sign that her mother was ill was when she became confused and could not remember small things recalled Ms Poonam Natarajan, Chairperson, the National Trust. Ms Natarajan,
who shared her personal experience of looking after her mother who suffered from Alzheimer’s recounted how her mother could not find her room at a hotel. This was followed by her inability to do small things like making tea. “She could not remember how to light the gas. She had been a teacher for 20 years. She wanted to go to work but we could not let her go. Since she suffered from short term memory loss, she would remember her past and wanted to meet her brothers. She stopped recognizing her home and wanted to go to her old house. She would open the door and walk off. Fortunately, we lived in a campus where everyone knew her so it wasn’t hard to find her,” said Ms Natarajan. She said that her mother slowly lost her motor and mental milestones. “We would keep reminding her of familiar things so that it would ring a bell somewhere.”
However, finally they had to get professional caregivers as they were unable to deal with her
alone. “Tara, one of the caregivers, was illiterate but was so gentle and caring. She knew what to do and looked after her so well till her death. So we should look at training people who have the ability to care even if they are not literate. At the Trust, we are training young people with little or no educational qualification as caregivers for people with special needs,” said Ms Natarajan. Caregivers Are Hidden Patients
A vast majority of elderly with dementia are cared by their families at home, said Dr Rajesh Sagar, Additional Professor, Department of Psychiatry, AIIMS. Unlike western countries, institutional care was not readily available and often one or two family members, usually females, bore the burden of care, he stated. Although the process of caring was perceived as ‘rewarding’ and ‘fulfilling’, it was exhausting and overwhelming. “While 80 percent of dementia caregivers frequently experienced high levels of stress, almost 50 percent reported depressive symptoms. Almost 50 percent of the dementia caregivers have strained marital or family relationships and recent research has shown high levels of stress hormones, lower immunity and a greater risk of developing cardiovascular / other diseases among dementia caregivers,” revealed Dr Sagar. He said that caregivers tended to ignore or overlook their own health problems and continued to suffer from physical or psychological ill-health. “This is why we call them hidden patients, those who often suffer in silence but need support and attention,” he pointed out.
He said caregivers should find ways to deal with stress and strike a balance between the caregiving process and their own life. In the long-term, such a balance would help to improve the quality of care provided as well as the quality of life of caregiver, he said. Breakthrough Technology to Diagnose AD
Technology is now available to help in diagnosis and detection of early signs of Alzheimer’s disease. According to Dr Pravat Mandal, Additional Professor, National Brain Research Centre (NBRC), Manesar, a simple non invasive magnetic resonance imaging (MRI) or brain mapping can track or detect changes in the brain. “Early detection can help in improving the quality of life of people suffering from AD,” said Dr Mandal He revealed that patients were referred from AIIMS and the MRI was conducted free of cost. “Normally people come when it is too late for us to really be of help in terms of treatment. If persons come for mapping at a younger age, we can quantify stress levels and map the chemical changes in the chemical five years before onset of AD,” he said. Although three percent of pop are at risk of AD, it can affect the young as well. Dr Mandal recalled a case of a 38 year old man who had come to NBRC and was suffering from AD. However, in this case the problem was genetic as he had a family history with his parents and sister also patients of AD.
“Younger people can also get because depression and tension can trigger dementia. Since we measure these levels of depression and tension, this information helps the neurologist to prescribe the proper treatment,” pointed out Mr Mandal.
More importantly, Dr Mandal said that the new imaging technology could also check if medication was effective by doing an MRI before and after the treatment. A Home Away From Home
Ms. Neelam Mohan, founder, Panchvati, pointed out that her residency was like a home away from home and gave all the residents the freedom to do whatever they wished. “This residency came about after I realised that senior citizens needed a place to stay which was just like their home. Here they could stay while undergoing medical treatment in Delhi without having to be a burden on anyone. They could also just come to stay here for whatever reason,” said Ms Mohan. Ms Mohan, a designer and entrepreneur converted her factory into a home for senior citizens. There was no age bar for residents. In fact, Panchvati gave the senior citizens the freedom to cook, to read, play board games and celebrate festivities. “We keep them engaged so that they don’t feel neglected or isolated,” she stated.
Giving Senior Citizens Dignity Senior Citizens Associations’ representatives from Safdarjung Enclave, Dwarka and Faridabad also gave their views on the elderly.
According to Mr VK Gupta, President, Senior Citizens Council of Delhi, Safdarjung Enclave, about 500 senior citizens meet every day.”We protect older people from loneliness as well as abuse from their families. We have 25, 000 members from all over the country .We arrange holidays and pilgrimages for them., help them with filing tax, bills and other related problems,” he said. Mr Balbir Singh Yadav, President, Senior Citizens Association, Dwarka and Mr Satish Kumar, President, Senior Citizens Forum, Faridabad, also shared how their groups were networking with the elderly in their respective areas to see that the senior citizens were aware of their rights and were not denied government benefits.