‘It’s not a budhapa thing’

The case of the lost-and-found BARC scientist has shown how communities need to form a safety net for elders with dementia… at least until dedicated centres for their care rise

On September 5, Dr Vinayak Kolvankar, a retired scientist, went below his home at Bandra East’s MIG Colony to buy fresh flowers for puja, as on any other day. He was found on September 11 in Andheri West. Struck by dementia five years ago, the former BARC (Bhabha Atomic Research Centre) employee had wandered for six days. Kolvankar’s story is one that some of us may have witnessed first-hand with a family member.

Dementia is a broad term for diseases of cognitive decay that affect a person’s ability to think, remember, and perform daily activities and social abilities.  There are six kinds of dementia, with Alzheimer’s disease and vascular dementia being the most common. It’s not a normal part of aging, though age is the biggest known risk factor. In India, dementia is often brushed away as age-related forgetfulness.

A 2019 report, Dementia in India—A Call for Action, found that about 4.1 million persons aged over 60 years had dementia in India in 2015. This number was estimated to rise to 6.35 million by 2025 and to 13.33 million by 2050. This has nudged players in the senior citizen care segment to focus on dementia when conceiving and building their services.

Actor Robin Williams’ Parkinsons led to memory loss among other effects. Pic/Getty Images

Prasad Bhide, who established the elder care service called Aaji Care 10 years ago, says that their dementia care centres in Pune, Thane and Versova are testament to the growing need for specialised care. “Most people don’t like to accept that their loved ones need specialised care as the years go by,” says the entrepreneur. “Dementia is a neurodegenerative disease, and care for these patients goes beyond just locking them inside the house. They need 24x7 monitoring.”

Recalling an incident of a dementia patient wandering away from a centre, Bhide says, “The [retired] banker went to his former office because it was the only place he knew when he didn’t remember anything.” Kolvankar, informs his psychologist Saakshi Patel, was trying to get to Bandra West where he had lived most of his adult life. 

Amboli Naka, where he was found, used to be his brother’s residence.

Actor Ranbir Kapoor recently revealed about his uncle, actor Randhir, dealing with dementia. Pic/Getty Images

In the absence of cure and preventive measures for dementia, the degeneration can only be monitored and controlled via medication. “Other than residing in centres such as ours, a community has to be created around individuals like Kolvankar,” says Bhide. “The watchman, shopkeepers outside the society, and other vendors in the area need to be informed and told to keep an eye out for the persons, which many people may avoid doing because of the stigma attached to dementia.” He also advises the use of technology to track and monitor loved ones.

“You can make them wear watches with GPS trackers, place cameras inside homes to track them going in and out of the house,” he says, “but the most vital thing is to consult a neurologist. They will be able to narrow down what kind of dementia the person has and prescribe medication accordingly.”

Dr Annu Aggarwal is a consultant neurologist and specialist in cognitive and behavioural neurology attached to Kokilaben Dhirubhai Ambani Hospital and Medical Research Institute. The hospital has one of the largest research centres for Parkinson’s disease in the private health sector. Though the disease starts out with physical symptoms, problems with cognitive function come in later, and four out of five Parkinson’s patients develop dementia.

Prasad Bhide from Aaji Care talks about how dementia centres like his are growing in number due to specific needs of patients. Pic/Aditi Haralkar

Dr Aggarwal observes that often when a senior with dementia loses his or her way, it has more to do with spatial and visual recognition than memory impairment. “One of the earliest signs is noticed when seniors move residences between two or three children,” she says, “When they live with a child whom they do not visit often, they tend to lose their way. One of the first things doctors must do is warn the family how lack of spatial recognition will lead to them losing their way. Intermittent memory loss, like forgetting an incident or name, can be managed. 

However, when the ability to recognise a space is hindered, children and relatives have to start preparing the environment for the same.”

While most of us know about Alzheimer’s, Vascular dementia and it’s symptoms are not as familiar and spoken about. “There are two types of Vascular dementia,” says Dr Aggarwal, “In one type, the patient suffers brain strokes, could lose mobility and begin to show signs of dementia as well. In the second type, the patient could get multiple mini brain strokes but the only outward sign could be that the person admits to sleeping very little. The biggest sign is that the person will not be able to recollect details, or get confused about the way home.”

Karyn Pearl and Vinayak Kalvankar

Most dementia patients, observes Aggarwal, have lifestyle-related comorbidities such as obesity, hypertension and diabetes. “People who have an overall good lifestyle,” says the doctor, “ie, fairly regular exercise and wholesome food are unlikely to get dementia. Even if they do get it, their condition does not slide at the pace of a patient who is a smoker, diabetic or obese.” Different research across countries and demographics has found that those with Type 2 diabetes (where the body either doesn’t produce enough insulin or resists insulin) have between 16 to 22 per cent likelihood of developing some form of dementia.

Karyn pearl, 38, lost her father back in 2017 to tragic circumstances—Rolland Pearl slipped on the staircase outside his apartment in Panvel and sustained fatal injuries. He had been diagnosed with Parkinson’s disease.

The diagnosis itself did not come immediately. “In 2010, my dad had an incident where he collapsed while I was handing him a cup of tea. We rushed to a doctor and they said that he has a clot in his brain,” says Pearl. Things kept getting worse when Rolland went all the way to Rasayani by mistake and called Pearl asking for the name of their apartment complex, “It was then that we took him to Hinduja and that is when we got the diagnosis of Parkinson’s. This was three years after the tea incident. They gave him physiotherapy and his blood thinners were already on but it was then that the doctors explained to us what the disease was. Until then we were kind of in the dark,” adds Pearl.

Rolland was known in the family for his ability to do hard labour and the loss of that ability did lead to frustration. We ask if any doctor recommended therapy of the nature Kolvankar and Patel were engaged in, “No… no one in Panvel or even Hinduja told us this. Mind you, this is almost 11 years ago,” says Pearl. The family looked for senior centres at the time to keep Rolland in a full-time care home. “The centres were not specifically for dementia but for senior citizens. In some, we didn’t like the quality of care for someone like my dad who had specific needs due to his forgetfulness. 

Also, most good centres were an hour away. All we thought was that if something were to happen, it would take us an hour to reach him. I felt that was unacceptable,” she adds. 

Rolland was lost for two days a few years before he passed on. 

He had gone out to walk their pet dog. During the search operation, it was Rolland’s canine companion that helped his son Jonathan trace and identify him on the Panvel-Sion highway.

Kolvankar, says Patel, is strong as an ox. “He has a solid lifestyle regimen, implemented by his wife,” she says, “Everything runs like clockwork in the house. But dementia makes seniors a bit sneaky. They try to slip out of the house when they can.”

Kolvankar was taken to BARC Hospital after he was found in Andheri. He had grown weak due to undernourishment, and had been vomiting. His limbs were bitten by insects, and CCTV footage showed him refusing food offered by good Samaritans. “Our view of dementia is very archaic,” says Patel. “It’s not just budhapa thing; it’s a disease and we need to start treating it like one. If you see a lost, confused senior citizen on the road or railway station, take them to the station master’s office or a nearby beat chowki. You never know whose parents you are returning home.”

What do you recommend

Dr Annu Aggarwal
Instead of wristwatches and phones that have GPS, stitch labels with the name and addresses of the patient on the inside hem of their clothing. Hire a dedicated daycare helper to monitor them at least. Create a community: Inform neighbours and security personnel that the senior has dementia and that they should watch them in public places.

Prasad Bhide
If the disease is getting out of control, consider a dementia centre. The needs of a patient with dementia are far more specific than those with comorbidities such as diabetes, for example.

Saakshi Patel
Get the elder to write their name and address in a book every day; this helps create a visual recall of the address. The importance of solving brain teasers cannot be understated: Sudoku, chess, and crossword puzzles are known to keep the brain sharp.

The key with getting the elderly to do these things, or attending social rituals, is to make it seem like going out for a movie or to a restaurant was their idea. Especially with seniors who were highly functional members of society, like Kolvankar.

"Exciting news! Mid-day is now on WhatsApp Channels Subscribe today by clicking the link and stay updated with the latest news!" Click here!