Care for elders with dementia

NEW DELHI: Of over 35 million people in the world living with dementia, about 3.7 million are in India, and experts say this figure is set to double within the decade.
"Dementia robs one of the ability to calculate, respond, think, behave, read, write, and perform other necessary skills, but because it isn't physically altering, it often goes missed.People assume it's just a sign of old age, so patients are usually diagnosed during middle or later stages," says Dr Manjari Tripathi, president of Alzheimer's and Related Disorders Society of India, Delhi Chapter; and additional professor, neurology, AIIMS.
Apart from the impact on a aged person's quality of life, dementia also puts a strong burden on caregivers, who may not be able to cope with the disease, or even be trained to give proper care. Dr Rajesh Sagar, additional professor at AIIMS department of psychiatry, says the caregivers are almost like hidden patients themselves. "They have little social life, may reduce job hours to take out time, endure financial and personal burden, experience stress and depression, and about 50% have strained relationships. They also have to deal with the grief over lost relationships when a loved one has dementia," he says.
Recalling her own experience as a caregiver to her mother, who had Alzheimer's, Poonam Natarajan says her diagnosis changed the dynamics at their home. "My mother used to take care of us, and suddenly there was a role reversal. My mother wouldn't recognize us, she would try to pull out her grey hair because she thought she was very young, by the end of it she couldn't speak, write, or control her motions. My father couldn't accept it, because he was too dependent on her," says Natarajan, chairperson of National Trust, who has worked with people with autism, cerebral palsy, mental retardation, and multiple disabilities. She says she had additional caregivers - illiterate women, but immense natural ability and intuition - to help her. "We should develop a pool of such caregivers, because many people may have learning disabilities and be bad academically, but they have a lot of love and care to give," she says.
The government does have policies in place for the welfare of senior citizens, such as the National Policy for Older Persons, Maintenance and Welfare of Parents and Senior Citizens Act, National Programme for Healthcare of Elderly, and the National Policy for Senior Citizens 2011, drafted by a committee chaired by Dr Mohini Giri and proposed for the 12 ^thPlan.
"We perform a brain imaging study free of cost for those over the age of 40 to catch early signs of Alzheimer's. It takes 15 minutes, and we can see stress, memory functions, and other brain activity," says Dr Pravat Mandal, additional professor, National Brain Research Center, of a government funded research.
But with over 90 million senior citizens in India - more than the total population of most countries, and expected to go up to 324 million by 2050 - the onus on caring for them cannot be solely on the government. Apart from those with dementia, senior citizens have a number of other ailments, and concerns, most notably isolation. ""Isolation leads to worry, which causes stress. Family is the best place for elderly as nobody can look after them better, but they cannot bear the burden of old age for a long time,"" says M M Sabharwal, president emeritus, HelpAge India.
J R Gupta, president of Senior Citizens Council of Delhi, has established a social network of 500 senior citizens who meet for an hour or two every morning. "They do yoga, then laughter therapy, and sometimes we have cultural programmes, doctor visits, and other activities. We also print a directory of all their numbers and they often talk on the phone for several hours a day," he says. They also organize cultural trips in reciprocation with networks in other states, even countries.
Neelam Mohan, who runs Panchvati, has truly made it a like a home, where they can be who they want to be. "We segregate the elderly or those with dementia and other chronic issues, but we need to make them a part of our lives. At Panchvati we frequently mix the elderly with young visitors, especially foreigner who stay here for a few weeks at a time," she says.