Living with dementia: How puzzles, word games and physical activity can slow down memory loss

By mid-2022, Swati was fumbling to understand numbers, the most visible symptom of frontotemporal dementia, where lobes of the brain at the front and sides shrink as a certain protein clusters around them, blocking their functions. Her diagnosis came as a shock for her sons as she had no family history. But going by the latest Lancet study on dementia, there are 14 lifestyle-related risk factors that can trigger it, if not addressed from an early age. So it could happen to anybody. In India, dementia among people older than 60 years is 7.4 per cent. About 8.8 million Indians are living with dementia.

Why diagnosis was difficult?

Dr Faheem Arshad, assistant professor of Neurology, National Institute of Mental Health and Neurosciences (NIMHANS), Bengaluru, explains that diagnosis in cases like Swati’s is difficult since frontotemporal dementia manifests as behavioural and language problems in the beginning. “That’s why it is often misdiagnosed as a psychiatric disorder such as bipolar, schizophrenia or depression,” he says. The most common symptoms involve extreme changes in behaviour and personality, including compulsive behaviour, a decline in personal hygiene, loss of empathy and inter-personal skills.

“In 2021, we realised for the first time that there was something seriously wrong with her. For someone who would keep the house spotlessly clean, she ignored it completely. She also became obsessed about storing water everywhere. She became anxious when the family was not together at the dining table. By November 2021, her anxiety escalated but the psychiatrist attributed it to the social isolation of the lockdown,” recalls Ravi.

Yet by October 2022, when the family gathered for Dussehra celebrations, she abhorred company. “Her unusual behaviour — obsession with storing water and inability to recall multiplication tables — was the first symptom that we could not read correctly. There is no treatment or medication available, you just have to manage the condition and delay progression,” says Ravi.

How the family rallied around

Swati was put on family cognitive stimulation therapy, which involves a wide range of activities to stimulate thinking and memory. These could be something as basic as word games, puzzles, music or even practical activities such as baking or gardening. “She was like this kid who had to be hand-held and brought out of a trough. The doctors worked with my dad to devise an activity module to help my mother,” says Ravi.

So now it is Swati’s turn to become a student as her husband helps her relearn everything that’s a memory blur. He helps her read the newspaper, write down the day, date, time and place, learn basic maths, identify five colours and write them down, keep the pastel strokes within margins of the colouring book, fit Lego blocks and identify Indian states on a map. “The idea is to keep her brain active and functional,” says Dr Arshad. There is evidence to show that those patients, who do word and number puzzles regularly and are physically active, manage to improve their memory, thinking and reasoning compared to those who remain inactive.

The brothers decided against shifting their parents from their traditional home near Bengaluru. “The community around is an important support system for him and my mother, who finds it easy to navigate her way in a familiar environment. An enabling environment matters most in healing dementia patients. Besides, my dad doesn’t want an unfamiliar caretaker and administers all the medication,” adds Ravi.

Sometimes, Swati feels frustrated with the way everybody treats her with kid gloves because she does not understand her condition, thinking she is a normal person. “However, there have been positive changes. She may not remember names but the face of a student she taught 30 years ago still brings a smile,” says Ravi. The two brothers ensure that their parents live with them sometimes as a change in environment is equally important for a dementia patient.

Why physical activity is a great stimulant?

Swati seems to enjoy her walks and usually feels cheerful after them. A fortnight ago, she underwent a knee replacement surgery on the insistence of her husband. “Soon they will resume their morning and evening walks together. The idea is to delay the inevitable in this degenerative disease and keep her alert and alive. In the advanced stages, mobility becomes an issue with such patients. They even have trouble swallowing food and end up choking as the food could enter a windpipe,” says Ravi.

The family ensures that Swati never misses her physical activities or her balanced diet of proteins and fibres. Sometimes she forgets to eat, at other times she overeats. But her family is happy so long as she remembers there are seven colours in a rainbow whenever she opens her colouring book.

(Names changed to protect privacy)