WORLD ALZHEIMER DAY
A helping hand
SYEDA FARIDA
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The Memory Clinic in Hyderabad is one of the few institutes in India which provides organised support to those suffering from Alzheimer’s.
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Photo: K. Gopinathan
Support structures are not yet there: Senior citizens demanding better care.
When Fazal*, a scientist, returned from his trip to Paris, never did he or his family realise that the world would change for them. What they brushed aside as lack of concentration turned out to be the initial stages of Alzheimer’s Disease.
220;People who keep changing jobs and are active mentally are not prone to the disease, it is said. No one has it in the family either. We do not know what the cause is. He used to travel alone internationally. Now we had to stop him from going to China. He is aware of his handicap,” says his wife Nida.
“We took my mother to a psychiatrist when we had to go to a neurologist. If diagnosed earlier, it can be helped it is said. There is a stigma associated with Alzheimer’s disease. I lived in Canada and I feel we don’t have that kind of awareness or infrastructure to take care of individuals. Today the family structure is not equipped to handle it in our country. When we have people with brain-related ailments, it is ironic that we as a society are not equipped with a support system to cope with it,” adds Rukhsana Ansari, a software engineer whose mother, a professor, is in the initial stages of dementia.
No organised support
It has been over 100 years since the first diagnosis of the Alzheimer’s disease and it would probably take several more decades in this part of the world to accept it as a social concern. While there is hope of a breakthrough with reports pouring in from the West, India is slowly inching towards organised support and a sharing of information on the disease.
A case in point is the Memory Clinic, Department of Neurology, Nizam’s Institute of Medical Sciences, Hyderabad. An out-patient based multidisciplinary specialist service, the clinic provides assessment and diagnostic services and treatment to individuals with memory disorders especially in early stages of the disease. The clinic takes referrals as well as direct consultation.
Complete care
Standard methods of cognitive and neurological assessment tests in Telugu, Urdu and English and also those with pictorial representation for the non-literate patients are followed, apart from diagnosis, treatment, psychotherapy and cognitive rehabilitation later. “The Memory Clinic was started in April 2002. Out of 250 patients we get with memory problems, 70 have Alzheimer’s Disease, 46 have stroke, 20 have anxiety and depression while 20 are normal or the worried well. We have a team of psychologists, psychiatrists, social workers and speech therapists who counsel the patients and their families,” says Dr. Suvarna Alladi of the Memory Clinic. Today the clinic plans to take a step ahead, with the commencement of the local Alzhiemers And Related Disorders Society of India (AARDSI) chapter here. “India is witnessing a demographic shift, the population is rapidly ageing. We need to have a system geared to deal with dementia, memory loss. With the AARDSI chapter, we plan to offer comprehensive care — organise public meetings, form care-givers network, address specific needs, share information and eventually have a daycare centre in a few years. This is the only way to go forward.”
The chapter does come as a boon to many care-givers like Nida and Rukhsana. “Improving the quality of life of the patient, tips for care-givers and more can be organised. There is so much literature available on the Internet that can be shared,” says Rukhsana.
If the AARDSI chapter plans to be a forum for the family and care-givers, the bedside assistance programme from Heritage Hospital Hyderabad comes as a boon for the nuclear families, or those with working couples or patients having children overseas.
Need for assistance
“In most cases of Alzheimer’s Disease care-givers are themselves old people. The age of the caregivers increases with the age of the patient. Also, in most cases, patients need not require hospitalisation. In order to offer quality living to the patient we provide bedside assistants as daycare, 24 X 7 care in shifts,” says K.R. Gangadharan, director, Heritage Hospital. The bedside assistants are trained in attending to personal care, feeding, administering medication, assisting in physiotherapy and so on. Also the team — social workers, psychotherapists, nurses — looks into individual needs of the patient.
What started in 1999 as an effort to offer help to the elderly in their familiar surroundings, has come in handy in dealing with Alzheimer’s Disease. “Care-giving becomes paramount in Alzheimer’s Disease, and appropriate for each stage. If you have a burnout, stop and let somebody take over,” sums up Rukhsana.
(*All names have been changed on request.)
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