By 2050, 20 per cent of India's parents will be suffering from dementia. To arrest its progression, a first-of-its-kind memory clinic in Mumbai is now opening its doors to senior citizens diagnosed with early symptoms
The afternoon sun is already overhead, when a bunch of 70-year-olds stream into Gate No. 2 at the heritage premises of Sir HN Reliance Foundation Hospital in Girgaum. At the entrance, the security — now a familiar face — greets them, as they trudge towards the vintage elevator at the lobby. For a hospital visit, this group looks rather animated; it's hard to tell that for the next 90 minutes or more, they'll be under the scrutiny of a team of doctors. But, that's what Dr Arun B Shah, consultant neurologist, envisioned when he admitted them into what he describes as the Memory School.
A first-of-its-kind initiative in the city, the school, which runs out of a spacious air-conditioned room inside the hospital, saw its first batch of around 10 students in August, this year. Since then, it has been conducting two classes every week — on Monday and Thursday — between 2 pm and 3.30 pm. Its patrons are all senior citizens with dementia. At present, they are offering batches comprising 12 (R22,000) and 24 sessions (R36,000) each. The syndrome is an umbrella term used to describe anyone who suffers from gradual decline in cognitive activities, like loss of memory, language functions or ability to think, says Shah.
"Dementia has been declared as one of the biggest global health crises of the 21st century. Every three seconds, a person is diagnosed with it, across the world. In India, the figures could be more horrific, but unfortunately we don't have any data available on a census questionnaire. Also, the social stigma, lack of awareness and facilities, is not very helpful to pinning the problem," says Vidya Shenoy, secretary general of the Alzheimer's and Related Disorders Society of India (ARDSI). The Girgaum hospital's classroom then becomes a scientific ecosystem, where pateints learn to fight this "irreversible condition" and thus, delay its progression and allay the toll it takes on their emotional well-being.
Making of the school
Shah, who first impressed upon the need for such a school and is the key architect of the project, says, that "in the last couple of years there has been an exponential rise in cases of dementia in the city". "Back in the 70s, when I was a still a medical student, reputed neurologists in city, openly claimed that dementia did not even exist in India. This is because the average lifespan then, was just 50 years, and we didn't have a large elderly population." With a significant population in the country now ageing, the cases have steadily gone up. "As per the 2015 statistics, around eight per cent of the population above 60 years of age presently has dementia. This figure is predicted to go up to 20 per cent in 2050. This corresponding rise means that by 2050, around 133 lakh people will have dementia," says Shah, while doling out cold facts.
Dementia, he explains, is often caused due to varied diseases or disorders. The commonest disease is the neurodegenerative Alzheimer's. There are other causes too — like vascular dementia (caused due to impaired blood flow) and frontotemporal dementia (caused by progressive nerve cell loss in the brain's frontal lobes) — but these are rare, says Shah, adding that the most glaring symptoms, would be when people are unable to recall events from recent memory, tend to be repetitive in conversations, or become forgetful.
The immediate motivation to start the school was the lacuna for a rehabilitation centre, where the elderly, affected people could be engaged productively even as their cognitive functions slowly deteriorated, says Dr Poonam Bajaj, consultant physiotherapist and rehab specialist at the hospital, who works with the students. Shah adds, "In a city like Mumbai, where we have more nuclear families now, it is impossible to constantly look after the elderly. The children have their own personal and work commitments, and are unable to give time or engage in conversation with their parents, who are affected with the problem. And, that's the reason they deteriorate faster, when actually the lifespan of someone with Alzheimer's is 10 years, if diagnosed in time."
Shah modeled the school on the findings of the famous Nun Study of Ageing and Alzheimer's Disease, which began in 1986, and examined 678 Catholic sisters 75 to 107 years of age, in the US. "Whatever we learned is from this study," Shah admits. As part of the study, the elderly Catholic nuns had had their genes analysed, their lifestyle monitored, their balance and strength measured, and their annual cognitive and physical functions evaluated, for about 15 years. From the analysis, the researchers were able to find out how Alzheimer's occurs.
"The popular theory is that there is deposition of a certain protein (amyloid) in the brain, which when is in excess causes tangles and affects synaptic functions of the brain. This deposition of these amyloids begin from the age of 30 or 40, and particularly when there are genetic risks," says Shah. The study, however, showed that there were nuns, whose brains were "full of this pathology" from an earlier age and yet were functioning normally.
"Retrospectively, the researchers tried to analyse their clinical situation and found that they were more social, had tried to learn many languages, and were very active in general. On the basis of this, they were able to conclude that if you develop your cognitive reserve right from the beginning, even though you have the Alzheimer's pathology, you are likely to function normally," he adds. The same concept has been applied to the school. "The idea is that if we keep them engaged in different kinds of activities, it will challenge their brain and their cognitive reserve will improve. The chances then, are that they will remain intellectually better and manage for a few more years."
Class in progress
Dr Karishma Jethmalani, neuropsychologist, leads the class into the session for the day. As part of the time-table, the class, now in its fifth week, is being taught Mandala art. Papers, sketch pens and other tools are distributed, before she briefs the elderly gathering about creating intricate patterns inside a circle. Just like in a regular art class, the students are hand-held through the process of drawing circles of varied sizes using a compass, before feeding it with different geometric designs and "favourite memories from their childhood". Their unsteady fingers navigate slowly on the drawing sheet, but the newness of the activity appears to be enough motivation.
"I had stopped painting after school… I didn't know I could still draw," one of the students, a retired doctor, excitedly tells Jethmalani, as the latter encourages her to make more complicated patterns. Dr Shraddha Shah, consulting neuropsychologist, who has helped design the curriculum, explains, "A condition like dementia can cause a lot of confusion and fear in an individual. Often, they find it difficult to process how they are feeling. Mandala art therapy allows them to express themselves emotionally." Cognitive stimulation therapy is the preferred line of treatment here, says Shraddha. The focus is on teaching soft skills to help the brain think, learn, remember, problem solve and communicate.
Not every patient of dementia is, however, equipped to process the new learning. Hence, only patients with early onset of dementia or mild cognitive impairment (MCI) are enrolled, after a thorough clinical assessment by Shah at the Memory Clinic of the hospital. "We want to have students who are on the same level, when it comes to the symptoms. Most of them here are those who have been complaining of memory impairment, but are functioning normally. These are people with MCI, who have not developed dementia yet. But study has shown that at least 20 per cent of them convert to dementia within a year of being diagnosed. If we catch them at this stage, they may not convert at all," he says. While all the students are 70 plus, recently a 50-year-old, diagnosed with MCI, was encouraged to join the school. Plans to have classes for younger patients are still in the pipeline, says Shah.
Ever since the school started on August 6, Shraddha and team have carried out a host of activities in the classroom — from craft, art, food, music and nature. "During the food session, they were asked to remember their favourite restaurant, or dish, which they know how to cook. Describing the recipe, involves organisation of thought and sequencing. They also were trained in verbal fluency, where they were asked to recall food items that are sweet. We also got them to plant moong and methi seeds, and every time they come for class, they had to remember to water it. The food session went on for a week," she says. The nature class saw the students recreate a beach with sand and other tactile material given to them, while in the music class, they were made to listen to sounds and recognise the instruments.
Apart from fuelling brain activity, the classroom is also a space, where they are encouraged to socialise with fellow students. There are research studies to show that sometimes isolation could speed up deterioration too, says Shraddha pointing to the Havard Longevity Study. "The study showed that even smoking and maintaining body weight has lesser impact on the lifespan of a person when compared to the quality of relationships, one has had. Building good relationships and constantly maintaining that, is crucial."
Here, she cites the example of one of the senior citizens, who has been her patient for the last two years, and joined the school, when it started. "Her main symptom when she started coming to me, at the age of 68, was that she had become completely apathetic. When she began attending class, she was very diffident and would just refuse to engage with the other students. It had a lot to do with poor self-esteem. However, after three to four sessions, she chit-chats with everyone, and has also exchanged numbers with some." At the end of every class, there is a ten-minute-long meditation session. "It involves orienting yourself to the present moment."
'She likes it here'
When renowned Mumbai-based physician Dr Ramnik Parekh, learned about the Memory School opening up this year, he went and spoke with his family member, also a doctor, who had been diagnosed with dementia, three years ago. "When many people are affected by this condition, they tend to be in denial. Fortunately, my family member was aware of the problem, and said she wanted to do something about it," says Parekh.
"She is enjoying being part of the community, and because, there are so many like her in the same room, she feels that her fight is not hers alone. Also, when group exercises are conducted, if she ends up doing slightly better than the rest her self-esteem goes up." When we spoke with the relative, now in her mid 70s, she says what she enjoyed most about being in the class was that "nobody was judging" her. "I feel free and accepted. Everyone is allowed to talk here, and freely express themselves. Outside, you tend to be snubbed. Each time I go there, I return happier."
That the students have been making a conscious effort, is visible when a wheelchair-bound woman says she doesn't feel like colouring in class. "I want to go home," she says, within 15 to 20 minutes of class. When Jethmalani politely asks her, if she'd like to sit and observe the others, she agrees, and sits for around an hour, before she requests to be excused.
Another senior citizen, who insists on only using bright colours — orange, yellow and red — for his drawings, hesitates when Jethmalani asks him, who dropped him to class today. The silence that immediately settles in the room, reminds us of the time when our teachers in school would put us on the back foot with a pointed question, right in the middle of a class. But, the elderly gentleman chooses to answer. "I think, I came alone today," he says, after some thought. One can't be sure if he was right or if his testing memory was playing tricks on him again, but his confidence was assuring.
The percentage of India's elderly population that suffers from dementia. The figure is expected to rise to 20 per cent by 2050, says Dr Arun B Shah.
A brief history of dementia
The most common dementia was named, in 1910, after Alois Alzheimer, a German psychiatrist. In 1906, Alzheimer, who looked at post-mortem brains of affected younger people, published the first case — a 50-year-old woman with dementia symptoms. After her death, Alzheimer saw the microscopic plaques and tangles now known as hallmarks of the disease. But, it was only in 1990s that the genetic mutations in Alzheimer's, the risk factors and the different stages of dementia slowly came to be identified.
Start early
Lifestyle changes and exercising one's brain can alter the progress of cognitive diseases. If you want to keep your brain fit, Dr Shraddha Shah suggests exercises such as spell words backwards. In another exercise, "to train to inhibit oneself," Shraddha flashed a series of numbers on a white screen, and asked people to clap, only stopping when number 3 flashed. To develop "category fluency", she asks to remember names of all possible cities in India, in just 30 seconds. Solving puzzles and crosswords are other simple activities.
A daycare at Dadar
Last year, the ARDSI launched a specialised daycare centre, Smriti Vishvam (Universe of Memory), for dementia patients in Dadar. Similar centres have been started other metros as well. People drop relatives at our daycare and pick them up at 4 pm. Through the day various therapy sessions are conducted. ARDSI, says Shenoy, is in talks with the state to start memory clinics at government hospitals.
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