The Singh family in Ghaziabad didn’t pay much attention when their 62-year-old father suddenly began to struggle to find the right words or remember the names of friends. He had loved travelling, but he stopped travelling and even avoided meeting friends and relatives. The family put it all down to age-related idiosyncrasy. Dementia or Alzheimer’s Disease wasn’t something that crossed their minds at that point. Mr Singh passed away within a span of one year. He had frontotemporal dementia. 

“We thought that retirement and COVID lockdown had made him irritated and stress was the culprit,” says Mrs Nath, wife of another 63-year-old Alzheimer’s patient in NOIDA, who retired from employment during the COVID-19 lockdown in 2020. Mr Nath was 61 when the symptoms of Alzheimer’s first began to show.

“But one day, nearly six to eight months after the first symptoms of forgetfulness and increased irritability, he couldn’t pull up the zip of his trousers. There came a time when he even began to neglect to dress up properly. At times, he would just go out, forgetting to even put on proper clothes,” recollects Mrs Nath. 

At this point, their daughter, Shruti, who lives abroad, visited them and pressured her mother, Mrs Nath to take him to the doctor – a neurological specialist. After several tests and brain mapping, the diagnosis was pronounced: Alzheimer’s Disease – indicating the death of brain cells, leading to memory loss and cognitive behaviour decline. 

“I did not know much about Alzheimer’s. I had to educate myself and now I am his only caregiver. Our daughter, Shruti, is my emotional support. His illness is progressing very fast. There are times when he forgets who I am. At times, he considers me his younger sister. He is oblivious to the world around him,” says a tearful Mrs Nath. “There are good days and bad days.” 

It is not only the Singh or Nath families who have learnt about dementia/Alzheimer’s the hard way. Not many, unless they have a direct experience with a sufferer, are aware of the causes, symptoms and implications of the disease. Every year, September is observed as World Alzheimer’s Month to raise awareness and dispel stigma around the disease and other forms of dementia.

Every three seconds, someone in the world develops Dementia/Alzheimer’s. Over 55 million people are living with dementia/Alzheimer’s and the number is increasing every year (Alzheimer’s Disease International, 2022 report). According to the World Health Organisation, Alzheimer’s is the seventh leading cause of death globally. In India more than 5 million people are living with dementia/Alzheimer’s, not counting the impact of it in rural India. It is estimated that the numbers would cross 7.5 million by 2030.  

“Yet we fail to address it,” says Sharada Subramaniam, former civil servant and leadership coach, whose mother passed away a few years back after battling Alzheimer’s for nearly 10 years. “And it is not just about being forgetful. Over the years, the cognitive powers of the sufferer disappear. The person living with dementia/Alzheimer’s can’t walk, eat and at times cannot even pass stool. It is heartbreaking for caregivers,” she adds.  

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Read more: This World Alzheimer’s Day, let us also spare some thought for caregivers

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The onset

Alzheimer’s disease does not affect one overnight. Often the initial warning signs (See box)  — memory lapses, disorientation of time and place, difficulty in performing everyday tasks, problems with words, language — appear subtly and go unnoticed. “It’s very hard to notice the effects of Alzheimer’s in the beginning. We passed it off as signs of stress,” says Tina Trilok whose mother passed away due to Alzheimer’s three years back. 

But as the disease progresses, it consumes the person and places them in a constant state of disorientation, creating confusion, mood swings, challenges in assimilating visual and spatial information. They are not only unable to remember but also lose mobility and the ability to do anything productive.

“It was heartbreaking to see the way my mother, who used to be fiercely independent, became so dependent on others. During her last few months, she virtually lived a vegetative life. She even couldn’t, or rather forgot to, pass stool and urine,” says Tina. 

There have been a few cases where a person living with dementia and Alzheimer’s became violent. “There were times when my mother hit me and there were days when she felt frightened and silently sat in some obscure place,” says Sharada. 

Stigma and misconceptions

Dementia/Alzheimer’s Disease is commonly considered to be an age-related problem. Families often generally dismiss the initial signs, saying, “Oh, at their age it is common.” However, Veena Sachdeva, Vice President, Alzheimer’s and Related Disorder Society of India (ARDSI), Delhi Chapter says, “It’s a myth that only older people get Alzheimer’s. Even younger people are known to have been afflicted by it. In our day-care centre, Okhla, Delhi, there’s a person who is in his 40s. But it is rare.”  

Then there’s the stigma attached to it, as with any other mental health issue. Some years back, Veena lost her mother to Alzheimer’s. “It’s a neurological disorder. But people still shy away from talking about it. They live in denial,” she says.

Often, dementia and Alzheimer’s are thought to be a problem among the middle and lower classes alone, but that too is a myth arising from lack of acceptance. “The upper middle and higher classes tend to live in denial. They push it under the carpet. As they have money and power, they keep attendants to take care of the family member living with dementia,” says Veena.

Says Paola Barbarino, CEO, Alzheimer’s Disease International (ADI) in their 2022 report, “Stigma is still one of our biggest problems in many countries, as is governments’ incapacity to accept that Alzheimer’s disease and dementia are present in all countries and that they need to take action to make the lives of people living with dementia and their families better.”

This stigma remains a major hurdle in taking care of the patients and their families. “A lending ear, compassion and patience are required.  The social stigma surrounding Alzheimer’s and dementia is impeding early diagnosis, care and research into the disease,” says Veena.

Often friends and relatives disregard the sentiments of the patient who has been diagnosed with the disease and whose brain is gradually fading away. “Social empathy,” says Veena, “is a challenge. It makes the person living with Alzheimer’s feel isolated and shunned by people who had been earlier their family members.”  

As Tina recalls, “When my mother was affected by the disease, people would make fun of her forgetfulness and joke about her condition. They would laugh and ask, ‘Tell me, who am I? Do you remember me?’ I never liked such conversation and I feel even my mother didn’t. She had Alzheimer’s, but she had emotions, too. At times, she used to turn her face away when asked such questions.”
There is no cure for Dementia/Alzheimer’s. Family members and the community can only help them live with dignity. But in the absence of awareness and empathy, they end up feeling alienated.

Abandonment or disappearance: Dominant trends

Perhaps due to a mix of the above factors, it is common to find many people with dementia and Alzheimer’s vanishing without a trace. Some leave their homes, while others may be abandoned. Some simply go out for a walk, but are unable to find their way back home with the disease having made them strangers to themselves.

Sometime back an old man was found sitting on the stairs of a temple in NOIDA, having been dropped off by a young man in a car, according to witnesses. He could not give his name, address or his family members’ names, but said, “My son will come to take me back.” But when two days had passed and nobody came for him, police rescued him and handed him over to an old age home. 

Then there are people like Priyanka’s father, a dementia patient, who simply went out and disappeared. Five years since, he is yet to be located. “I do not know whether he is alive or not. But even now, at night, whenever there’s a knock, I run to the door, thinking that the police may have found him,” says Priyanka of Crossings Republik, Ghaziabad. 

Stories such as these are all too common. The Delhi-NCR police receive at least two to three such complaints every second day. Surprisingly, no research has been conducted on the disappearance of dementia/Alzheimer’s patients.

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Read more: Why elderly people in family go missing, and how to deal with it

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NGOs working for the welfare of senior citizens, too, get frequent calls from unknown people. “Either our volunteers find people loitering around at various places, sleeping on footpaths or the railway station, or somebody informs us on the telephone. The moment we receive such calls we rush and bring them here,” says Pragya, administrative officer at the Guru Vishram Vridh Ashram, Badarpur, Delhi. The Vridh Ashram has more than 100 senior citizens. Approximately, 40% of them have Alzheimer’s. Some of them belong to well-to-do families.

The way forward

India has today more than 80 million people over the age of 65. “As the joint family system has disappeared, caring for a family member with dementia or Alzheimer’s is proving to be very difficult,” says Sharada and adds, “We could afford it because my mother used to get a widow’s pension and both my husband and I worked in class 1 service. Every month the medical and daycare centre expenses used to be somewhere around Rs 40000 to 50000. So, it could be rather difficult for a nuclear family and extremely difficult if there is only one earning member.” 

With the growth in the elderly population and disease striking even younger people, we are sitting on a ticking bomb. Veena feels, “Government ought to roll out financial as well as awareness policies specifically for dementia/Alzheimer’s.”

In the ADI report, From Plan to Impact, Paola Barbarino writes, “One of our biggest challenges continues to be that many governments do not have a way to classify dementia, it can sit awkwardly under a number of labels: mental health, brain health, non-communicable diseases, healthy ageing, sustainable development goals, universal health coverage and so on. This is not helping us at all.”  

The WHO had laid out a global plan of action on the public health response to dementia with a 2017-2025 timeline. This was universally adopted by WHO member states in May 2017. 

The plan committed all 194 member states of the WHO to seven action areas: Dementia as a public health priority; Dementia awareness; Risk reduction; Diagnosis, treatment and care; Support for caregivers; Data and research. It contains targets for each area that individual governments should meet by 2025. 

Unfortunately, however, India still has miles to go to implement these successfully.

Also read:

• What we need to keep our senior citizens safe, healthy and happy
• Why we need to rethink our post-retirement lives