Over 2.5 million Indians are estimated to be affected by Alzheimer’s disease. Goa has over 3000 sufferers, according to Dr Amit Dias, Project Director of the Dementia Society of Goa. Alzheimer’s disease is a crippling illness and causes much misery to the sufferer as well as to the care providers.
Nirmala’s mother was 86 and faded away by bits and pieces. “It was so unbelievably cruel and torturous to watch someone, who was an excellent teacher and active lover of life be whittled away by this hideous disease, a tiny bit at a time”, recalls Nirmala. “I really didn’t know how to convey how horrible this was for her and for me. I gave all of my life to caring for her 24/7”.
“I had no help at all and endured my own personal heartaches in silence. I courted depression several times, only to bounce back”.
Here is what I suggest to other caregivers, says Nirmala:-
“It is not possible to do without God and His guidance. If you don’t have Him, find Him as soon as possible”.
“Surround yourself with good advisers. But, most of all, find support within you, because even friends ultimately lose interest”.
“Try as possible to forget about your own life and give up tall dreams. Take one day at a time”.
“Don’t expect a medal for being the caregiver; also don’t accept being blamed for not being able to stay awake 24 hours a day. Go easy on yourself”.
“You might get a reward in heaven, but you’re not getting one here. So, pray. You will need a spiritual support system. God is the only one who will ever understand everything and give you the courage to go on”.
Ronald Reagan, the fiery US president reportedly had his first tryst with Alzheimer’s disease when on a presidential debate with Walter Mondale in 1984. “He floundered his way through his responses, fumbled with his notes, was uncharacteristically lost for words and looked tired and bewildered.” His downhill battle had just begun…
This year, as we all know, there was much jubilation when the Nobel prize for medicine went to three researchers for giving us clues as to how Alzheimer’s disrupts the brain navigation system. They found “an inner GPS” that makes it possible to know where we are, and how we find our way around. The landmark discovery opens the door to memory and its mysteries. A breakthrough, indeed — “one small step for a man, one giant leap for mankind”! The findings, though, have no immediate implications for new medicines or therapies of Alzheimer’s.
Alzheimer’s disease is a neurological disorder in which an accelerated death rate of brain cells causes memory loss and cognitive decline. As a neurodegenerative type of dementia, the disease starts mildly and gets progressively worse as the brain size shrinks. The death of brain cells cannot be halted or reversed. Alzheimer’s disease, like any other dementia, is a chronic disorder marked by memory disturbances, personality changes, and impaired reasoning.
The clinical diagnosis of Alzheimer’s is presumptive and neurologists use a battery of tests to arrive at a probable diagnosis. Symptoms of memory loss, especially in the area of learning and recalling new information, are prominent. But the initial presentation can often be a language problem where the sufferer struggles to find the right words.
There is no blood test to clinch the diagnosis. New brain imaging techniques offer some promise. What is more unfortunate is that there is no known cure for Alzheimer’s disease. Disease-modifying drugs, at the most, reduce its symptoms and help improve quality of life.
There is also no proven way to prevent Alzheimer’s disease. Research into prevention strategies is ongoing. The strongest evidence so far suggests that you may be able to lower your risk of Alzheimer’s disease by reducing important risk factors like high blood pressure, high blood cholesterol, excess weight and diabetes.
New programs targeted to people at high risk of Alzheimer’s disease are being developed. These multi-component programs encourage physical activity, cognitive stimulation, social engagement and a healthy diet. What is most necessary is that, no matter how old you are, you keep active physically, mentally and socially. This may not only help make your life more enjoyable, but may also reduce the risk of Alzheimer’s disease.
The pathetic plight of victims of Alzheimer’s disease and their care-providers has been the subject of much prose and poetry. These soulful lines are a reminder: – “I am gone bonkers/ pray don’t leave me/just remember that I need you/the best of me is gone/please stand beside me/ love me ‘till my life is done”…
(Dr. Francisco Colaço is a senior most consulting physician, pioneer of Echocardiography in Goa, column writer, singer/songwriter/music aficionado, Mando exponent, past president of the State IMA, social activist, popular orator and toastmaster, family man, with deep faith in God.)
