Anu* woke up in that dark hospital room and found her father searching for something on the floor. It was the middle of the night and Anu asked her father why he wasn’t asleep. Someone was in the room, he whispered, still looking anxiously around him where his family of four slept. That was the first sign. Rajan, Anu’s father, was showing early signs of dementia. The duty doctor said it could be temporary, but it needn’t be so.
Rajan was in his late 70s then, and in hospital to attend to his daughter for a treatment. None of his relatives thought he’d have an issue, the slender, healthy-looking man who was always on the move, working in the farm or cycling through his village in Alappuzha.
But Rajan, like his late mother, developed dementia and the early signs got worse in later months. Back in the village, he gradually started showing signs of restlessness. He would always sneak out of the house and the family would worry. A year later, Rajan could not recognise the house he'd lived in for seven decades and insisted that they – his wife and children whom he could not identify any longer – take him home. The stranger he was living with – the unfortunate wife – was stealing his money, he thought, and tried to beat her with objects he found handy.
Rajan’s story is only one of the 5.3 million such in the country. A study by the Alzheimer's and Related Disorders Society of India (ARDSI) Cochin Chapter reports that ‘5.3 million people above the age of 60 have dementia in India in 2020’. This means, the report says, that one in 27 people above the age of 60 in India, has dementia.
Kerala’s dementia numbers are high, being the state with the highest percentage of the elderly. At least 16% of the population in Kerala is above the age of 60. According to the 2020-21 data collected by ARDSI, the number of elderly people with dementia in Kerala is 2,16,000.
Estimated number of people with dementia among elderly in 2020-21 / Courtesy - ARDSI
Ironically, it’s when the health indices improved and people began to live longer that the prevalence of dementia rose across the world.
“There was a huge young population at a time people rarely made it beyond their 50s or 60s. Two factors in Kerala result in a higher number of dementia patients. One is the aging population percentage and the other is keeping the population growth under control. This means that newborns figuring in the younger section of the population would be lesser. Moreover, a large number of young people from Kerala work outside the state or the country, reducing many middle and upper class households to just the elderly,” says Dr Manoj Kumar, founder of Mental Health Action Trust (MHAT) in Kozhikode.
The disease occurs predominantly in older people and Kerala has a bigger percentage of the elderly population compared to the rest of India. “Around four percent of the Alzheimer’s patients in the country should be from Kerala, since we make about 3.5% of the total population. Globally, 65% of people above 65 years develop chronic health problems. There will be co-morbidities, which is a bigger problem for people with dementia,” says Dr KS Shaji, Professor of Psychiatry, Jubilee Mission Medical College, Thrissur. He was one of the editors of the ARDSI report on dementia in India 2020.
The ARDSI was founded by Dr Jacob Roy Kuriakose who devoted his life to finding solutions for Alzheimer's after his father was diagnosed with it in the late 1980s. Dr Jacob passed away in February this year, but the institution he founded proceeded with the research work.
Dr Jacob wrote his own story in the report, as did several others who have either become victims of the disease or else have given care to people with dementia.
A woman in Ernakulam writes about her mother-in-law who, due to the disease, believed the daughter-in-law was trying to steal her property. The daughter-in-law could not take it anymore when the older woman began treating her son as the husband and thought that he was having an affair with the daughter-in-law.
The patients themselves notice the changes that come to them in the early stages. A man in Bengaluru writes of getting all his property documents in order since he may not be able to do it another day. Another man in Chennai began to worry when he started losing his grasp of the language that he was very good at.
“There is now better awareness and a good number of people approach a doctor, asking if they have dementia when perhaps they might be going through depression since the latter can also make you forgetful at times,” says Dr Roy Kallivayalil, professor of psychiatry at the Pushpagiri Institute of Medical Sciences in Thiruvalla.
On September 21, World Alzheimer’s Day, Dr Roy put out a short video on Twitter, to give tips on how to help people with dementia. He suggested sensory stimulation – various therapies such as music, aroma and bright light – behavioural management, encouraging social contact and person centred care.
Today, Sept 21 is #World #Alzheimers #Day.
— Dr Roy Kallivayalil (@RoyKallivayalil) September 21, 2020
The theme this year is “let’s talk about #Dementia “.
The commonest form of dementia is Alzheimer’s disease, 50 to 60%.
How can we contribute to the management of people with dementia?#Health #Mentalhealth #publichealth #Psychiatry pic.twitter.com/3tNgjMsSNJ
“Dementia would affect the faculties of memory, intelligence and personality. It starts with Mild Cognitive Impairment (MCI), which is a forerunner for dementia. One third of the time, MCI leads to dementia in due course. Medication helps arrest the progress of the disease but there is a lot of importance in non pharmacological management (the measures he tweeted about),” Dr Roy tells TNM.
Since methods to prevent dementia have not yet been found, Dr Roy suggests ways in which you could delay the onset and thereby escape the worst of it. “When you follow a healthy lifestyle, with regular exercise of at least 40 minutes a day, control calories and insulate yourself from unnecessary stress, you can possibly delay the onset of the disease. Say if I were to develop dementia at the age of 80, I would push it to age 90 with all these measures and by the time dementia strikes, I’d be no more. Building up cognitive resources with creative or intellectual activities such as reading or writing also helps.”
In addition, an increased level of awareness is always recommended, says Dr Manoj. A person with dementia may never come forward and say that something is wrong with them. The others with them should not take early symptoms lightly. Often the diagnosis comes late and then neither the patient nor their families are ready to accept it.
Alzheimer’s is as much a care issue as it is a treatment issue, observes Dr Manoj. He shares the story of a son who had not realised his aging mother was going through the first stages of dementia when she went to the well outside their home and came back without taking a bath. The guilt of not caring enough in those early stages or losing his temper at times is still eating him. Stories of caregivers are often heartbreaking, but not always given the attention they deserve. They need a support system as well, say experts.
“The people with dementia can sometimes get abusive, forgetful enough to soil the whole house with their faeces or urine. The people who look after them – mostly the closest member of the family such as a spouse or child – need support. More than anything, they need regular breaks or just the burnout could be too much to bear,” Dr Roy recommends.
The patients need a lot of looking after unlike in other mental health issues. It is a question of who can provide that kind of 24-hour care.
“The burden of the care often falls on whoever’s living with them – and this could sometimes be an elderly spouse, who themselves would have other health issues,” Dr Manoj says.
In the case of Rajan, this is true. Anu lives away with her marital family, so it is her aged mother who looks after his every need. Rajan, unable to recognise his wife of five decades anymore, hits her thinking she is an enemy who is trying to torture him.
Institutional care is not advisable, Dr Manoj says, but community based care can help in the early stages. Late Dr Jacob founded ARDSI as a centre for community, mental health and dementia, realising that there was such a need. But in the latter stages, it’s recommended that the patients remain home with families.
It becomes difficult when a person with dementia also has co-morbidities such as diabetes or hypertension or heart diseases. Dr Shaji points out that dementia causes loss of executive functions like planning and organising your daily activities. Such simple tasks as going to the bank or paying a bill can prove difficult. So they’re just as likely to forget their daily medications for other co-morbidities. Managing health problems becomes an issue.
Added to that, the COVID-19 pandemic has struck. “People with co-morbidities cannot go to a hospital at a time when reverse quarantine is recommended for the elderly. Management of non communicable diseases has been seriously affected,” Dr Shaji says.
(* name changed)