Times of India
09 September 2010
By Roli Srivastava
Hyderabad, India

A 75–year–old perks up when asked who plays the lead in the 1970 film ‘Mera Naam Joker’. The memory of his youth still seems fresh as he confidently answers ‘Raj Kapoor’, but the next question stumps him. He is asked to recall three simple words (lemon, ball and key) he was told just five minutes ago.

He strains a little and recalls lemon and ball, but forgets the key. But then, there are other things he forgets. He runs errands but finds himself at a loss if he has to visit more than one shop. "I can remember just one errand at a time,’’ he says, as he gets himself tested at the ‘Memory Clinic’ at the Nizam’s Institute of Medical Sciences (Nims).

At around the same time, in another corner of the city at Kavuri Hills, a 60–something retired LIC official narrates how her dentist almost cheated her had it not been for her presence of mind. "I had a problem with just one tooth and he wanted to replace all my teeth,’’ she laughs, saying how she was smart enough to see through his cunning prescription. But this is an unusual anecdote.

Her son says the incident never happened, she never visited any dentist. "But it’s strange how she remembers this illusional anecdote and narrates it repeatedly through the day, but forgets something she did just five minutes ago,’’ says her son Anil Prabhu, sharing his concern with a psychologist and a social worker from Alzheimer’s and Related Disorders Society of India (ARDSI).

But then ‘recent memory loss’ is the most significant characteristic of patients suffering from Alzheimer’s, such as the 75–year–old man at the memory clinic or the retired insurance official. In another room of the memory clinic, an elderly man works sincerely on a jigsaw puzzle and once he manages to get the hut in place, he beams. "It is not such things that are a problem. I forget places,’’ he says.

But the stories of these patients at various stages of Alzheimer’s disease are not as simple as that of memory loss. Their stories are more about their family members unable to come to terms with their loved one’s condition: a prolific reader mom shunning books entirely or the immaculately clean father who just cannot find his way to the washroom anymore.

There are an estimated 40,000 people suffering from Alzheimer’s disease in Hyderabad alone but just about 300–odd are possibly aware that they suffer from this condition. These are the ones who have come out to seek treatment even as the rest assume that loss of memory is an inevitable side–effect of aging. Worse, most doctors too continue to believe that Alzheimer’s is an old age problem and cannot be cured.

And it is exactly this ‘treatment gap’ that ARDSI is trying to address. While patients come for their memory tests at Nims (most of the time referred by neurologists), ARDSI compliments the memory clinic’s services by raising awareness on the disease so that more patients selfrefer themselves and come for the memory test, in addition to offering support services not just to the patients but even their family members.

"They (family members) think they have to manage on their own. They don’t know where to go for care,’’ says Dr Alladi Suvarna, neurologist with Nims who manages the memory clinic and is president of ARDSI. But a support group like ARDSI makes them understand that if not a cure, a better management of the illness is possible.

"We wish to reach out to more people, spread more awareness,’’ says Rukhsana Ansari, secretary, ARDSI, that offers a day care service every Saturday to five to seven people suffering from Alzheimer’s and even has also home visits to help families cope intelligently with a patient.

Beneficiaries of ARDSI’s support say that the society offers solutions on how to handle an Alzheimer’s patient. If Prabhu found quizzes and games suggested by ARDSI as a solution he could never think of himself to keep his mother busy, Sobha Madhav whose husband’s Alzheimer condition is in an advanced stage, says the society trained her not only as a caregiver but even gave her mental strength to deal with her husband’s condition.

Ansari says ARDSI wants to scale its operations, have a mobile van unit that makes more home visits than they do now, and undertake bigger awareness activities. With a modest budget of Rs 4 to 5 lakh to achieve this goal, ARDSI hopes to find a donor for this cause.

Until then, ARDSI continues its awareness drive. On Sunday, it will hold a ‘memory walk’ at Necklace Road, to mark World Alzheimer’s Day on September 21. And for families of those suffering from the condition, the walk’s theme of ‘We Are Our Memories’ is just apt.