Why it is a lonely journey for dementia caregivers

There is a dire shortage of specialists and dementia homes in the country

30-Bina-Berry Good times: Bina Berry (left) with her mother and son, during a day cruise in 1985.


Halwa used to be the magic word in Bina Berry’s household. Her mother Raj would make it at the drop of a hat—when the weather changed, when there was an auspicious occasion or celebration, and most of all, when her dad, Ram, craved it. One day Raj made it for him, even though it was a hot summer afternoon and he did not really feel like having it. To appease Raj, Ram took a spoonful, yet it did not taste like halwa. He asked her what she had put in it. She could not remember. “Something,” she mumbled. “Do you want me to eat this and die?” he asked her angrily. “I have no time. I am leaving and I am not going to eat this.” When he returned two hours later, his wife of 55 years was sitting on the sofa and crying.

According to Alzheimer's Disease International (ADI), 32 countries have adopted a plan on dementia. India has not.... Only a fraction of our GDP is allocated to diseases affecting the elderly.
Early diagnosis is crucial, because if you pick up the symptoms within one or two years, then you can start the treatment.... As per the ADI, only about 10 per cent of dementia cases are picked up early in India. ―Dr Mathew Varghese, Senior professor of psychiatry

That was the beginning of Raj’s dementia, a condition neither Bina nor her father was much aware of. It would slowly eat her from the inside. According to the WHO, dementia is an umbrella term for several diseases affecting memory, other cognitive abilities and behaviour that interfere significantly with a person’s ability to maintain their activities of daily living. Alzheimer’s disease, vascular dementia, Lewy body dementia and frontotemporal dementia account for 90 per cent of all dementia. Alzheimer’s is the most common. An estimated 8.8 million Indians older than 60 years have dementia, as per a report published last year in the Alzheimer’s & Dementia journal. Here, we don’t have the resources or the personnel required to deal with such a huge disease burden. Take memory clinics, for example. In several parts of the world, memory clinics—or centres with a multidisciplinary team consisting of specialists like psychiatrists or neurologists as well as nurses, social workers and volunteers—have been shown to significantly improve dementia diagnosis and management. In India, very few memory clinics are run by government hospitals. In 2010, there was one clinic for 37,000 people. These clinics are also “sporadic and unplanned”, and there are no regulations, guidelines or third-party assessment to gauge their quality. It is estimated that there are only 20 daycare centres and 30 full-time residential centres that cater to the needs of people with dementia across India, and they are mostly concentrated around major cities, states a 2019 report in the Indian Journal of Psychological Medicine.

“There are many old age homes, but few dementia centres here,” says Mercy Antony, who runs the St. Theresa's Dementia Care Home in Kochi, Kerala. “We found it difficult to find a space to open this home. Even when we were willing to pay, landowners were unwilling to give the space to house dementia patients, who some believe are mad.” There are music, games, grooming sessions, prayers and exercises for those who live in St. Theresa's. They are given wholesome meals, with chicken, fish and eggs included. Doctors visit twice a month. The home was maintained well, with clean floors, tidy rooms and nets on the windows. However, there did not seem to be any prescribed set of rules and regulations that were followed. “Health inspectors do visit regularly to ensure cleanliness and safety,” said Antony.

There is also a dire shortage of specialists to treat dementia patients. “A neuropsychological evaluation to diagnose dementia is a specialty,” says Dr Robert Mathew, professor of neurology and chairman of the Kerala chapter of the Alzheimer’s and Related Disorders Society of India (ARDSI). “A neuropsychologist is someone who has worked for two years in dementia care after a post-doctorate in psychology. India has very few of them. Otherwise, a physician or neurologist clinically evaluates the patient. A test which should take two hours is often done in 10 minutes.”


33-Geeta-Iyer-with-her-father Daddy's girl: Geeta iyer with her father.

Geeta Iyer’s father was a self-made man who, in many ways, was ahead of his time. He had three daughters and he did not treat them any differently than sons. He was not able to complete his studies, so he ensured his children did. Geeta worked as a consultant in the US for many years. One of her sisters is a doctor, and the other completed her PhD. When her mother left to the US for a year while Geeta was still in school, it was her father who cooked her meals, ironed her clothes and took care of her. Whenever she had an exam, her father would be the first to wake up and make her coffee.

Then, in 2017, life changed for the family when he started showing early signs of dementia. They were in the US then. In the beginning, it was small things like forgetting the way to the bathroom or imagining that he was in a train when he was not. Then he started forgetting faces—even that of his wife or grandson.

“He was not able to articulate it, but he was aware that something was changing in him,” says Geeta. “He was a very ritualistic man, the first to wake up, bathe and pray. He was forgetting some of the prayers which he had chanted since his teens, and he would feel very sad about it. So, I would play those prayers on YouTube and he would chant along.”

Because she knew she would need full-time help to take care of her father, she moved from the US to Mumbai in 2018. In the beginning, the move was challenging. “The health care system is very structured in the US,” she says. “There are organisations like Dementia Action Alliance run by dementia patients themselves. Here, there is nothing like that. I found even the support groups for caregivers to be more organised in the US. There was more empathy. They were more inclusive with a moderator ensuring everyone got a chance to speak. Even the hospitals here are not dementia friendly. There is no wheelchair access. It is very difficult to navigate, with a lot of clutter and furniture scattered all around.”

Another problem is that most doctors in India are not sensitised to the specific challenges posed by dementia. “My experience with doctors has been abrasive,” says Sanjiv Pai, a teacher who took care of his mother with dementia until her death in January. “They said contradictory things and could not explain matters logically. One of them told me that this was normal ageing. It was only later I came to know that there are different types of dementia, and some can be treated partially with medicines. If caregivers are given this information, they can make more effective decisions. There are very few doctors who are genuinely empathetic.”

This is corroborated by the Dementia in India report of 2020, brought out by the ARDSI. “Many health care providers are reluctant to make a diagnosis of dementia as they think they have nothing to offer once the diagnosis is made,” it states. “This scenario should change. Health care providers, especially those who have had no specialist training in psychiatry or neurology, often do not recognise the important role of non-pharmacological interventions in dementia care. They often do not initiate simple basic interventions like provision of information about dementia and support for caregivers. These services are simple, basic and should be given to all.”

According to Alzheimer’s Disease International (ADI), 32 countries have adopted a plan on dementia. India has not. With the exception of Kerala, the government does not have a medical care policy for people suffering from dementia. India spends only 1.2 per cent of its GDP on health care. Only a small fraction of this is allocated to diseases affecting the elderly. According to the Dementia in India report, the estimated household costs of caring for a person with dementia is between Rs29,272 and Rs95,208 per household per year in rural areas, and between Rs65,755 and Rs2,91,933 in urban areas. When asked whether there are any financial schemes specifically for caregivers of dementia patients, Mathew asks, “The government has not even recognised dementia, so how can there be any financial schemes?”


Age no bar: Sonal Desai Kapur's mother-in-law with her daughter. Age no bar: Sonal Desai Kapur's mother-in-law with her daughter.

Imagination. What can be the greatest asset for a creative person can be the greatest liability for a dementia patient. Their mind is constantly playing tricks on them. When the line between the real and the imaginary becomes blurred, you no longer have control over your thoughts. For Bina’s mother Raj, it came in the form of hallucinations.

“Look, they are coming,” she screamed one day. “They’ll kill you… us… all of us.” That evening, Raj spoke at length about the horror of partition, which she had experienced as a young woman fleeing Pakistan with her family. Many times, they had to restrain her physically when she would shriek and scream. Bina describes in her book, Vismrit, how she would hold her mother’s hands to keep her from thrashing around. Now, when she looks back, she wishes she had dealt with those episodes better. Where force did not work, coaxing might have.

“Today I am left with a certain guilt that I could have done more for her,” Bina tells THE WEEK. “I could have given her more time. I was running a PR agency then. I could have closed my business earlier than I did. Had I looked after myself better or gone for counselling, I may have been able to handle her better. But there was no one to guide me. Every day was a surprise. The doctors were no help at all. They only prescribed medicines and did not say anything about counselling or caregiving.”

Then there is the stress of taking care of a dementia patient—the sleeplessness, the long hours, the shortage of trained professionals to help you, the social isolation, the financial burden…. The 10/66 dementia study found that between 40 per cent and 72 per cent of primary caregivers reported high levels of psychological morbidity. “Even though there was a paid caregiver to take care of my mother-in-law who had dementia, every day there was some problem or the other,” says Sonal Desai Kapur from Mumbai. “They know how to give nursing care, but they don’t know how to handle behavioural changes. My mother-in-law would forget that she had eaten, refuse to have baths or spit out her medicines. Even though there are many people like me in the country, we are alone in our journey. Because you cannot step out of the house, you lose your social contacts. One thing I realised is that if you talk to someone who has not handled a dementia patient in their immediate family, they just don’t understand the challenges. If they ask me how she is doing, and I try to explain, 99 per cent of the time, the response I get is, ‘But that happens to everyone in old age.’ Awareness does not come unless you see it for yourself. I also realised that even though dementia patients lose their ability to speak and express themselves, their feelings are intact. So you should treat them accordingly, with compassion and empathy. If there are children in the house, involve them in the caring process. Let them interact and spend time with them.”

Most of the primary caregivers are learning on the go. There are very few skilling programmes in the country. “Love is not the same as caregiving skills,” says someone working in dementia advocacy, who did not want to be named. “Families come away confused because nobody tells them that caring for a dementia patient requires a different set of skills than what is required in caring for a normal senior.”


Book buddies: Jaspreet Kaur Chakkal with her mother. Book buddies: Jaspreet Kaur Chakkal with her mother.

Jaspreet Kaur Chakkal’s parents lived on a street in Punjab where, due to militancy, there was much bloodshed in the 1980s and 1990s. Her mother’s father left the British police and joined the freedom struggle. Their income dried up, and there were days when her grandmother had to ask neighbours for flour to feed her children. Being the eldest, Jaspreet's mother started working at a very young age to support the family. Jaspreet’s father, on the other hand, was a sniper in the Dras sector near Kargil. He sent whatever money he saved back home to help his father educate his siblings. After Operation Blue Star in 1984, when Jaspreet was a little girl, her parents used to bundle her in a quilt and hide her under the bed so that she would not hear the gunshots. There was no gate outside their home. It was just an open courtyard. After heavy shelling, she remembers using the empty shells lying around as glasses for her dolls. At the age of eight, to keep her safe, her parents sent her to her uncle’s house in the city. Since then, she saw them only for a few days every summer vacation or Diwali. It was only in the last eight years of her parents’ lives, when her father was diagnosed with Parkinson’s and her mother with Alzheimer's, and she took them to Noida to live with her, that she really came to build a relationship with them.

“Only when I started taking care of them did I start seeing them as human beings and not just as parents,” she says. “I tried to understand what their lives would have been like. My father, for example, would hallucinate about the violence and bloodshed during the time of militancy. He would imagine he saw people with guns sitting on the parapet behind the curtain. To allay him, I would make five to seven cups of coffee and set it on the dining table. ‘Let’s invite them in for coffee,’ I would tell him. My mother would imagine seeing tortoises in the room, and I would do this elaborate act where I would pretend to jump over them in order to get to her.”

Jaspreet was also certain of one thing: She wanted her parents to have a dignified end, and so the time between life and death had to be spent as joyously as possible. She wanted to rid them of the fear of death, so it became very normal in their home to talk and even joke about it. Though her parents were losing their cognitive skills, it almost became a daily conversation. Once, she asked her mom whether she wanted to be electrocuted or cremated after her death. Her mother said she did not want electrocution because she could not bear to have current pass through her. She and her dad laughed, but her mom did not. It was a very serious issue for her. Another time, her dad joked that he wanted whisky served at his funeral.

“In our culture, the first thing we are taught is that we are going to die one day,” she says. “Despite knowing that, we do everything in the world except talk about it. Sometimes my parents and I would be sitting together and enjoying our evening tea, and I would find myself wondering if they would still be alive when I returned from office the next day. In a way, we are never prepared to lose our parents. Yet, my purpose in taking care of them was not to extend their lives, but to celebrate every moment till the end.”

Palliative care is a relatively new concept in India, and it is usually reserved for cancer. But there is an important place for it in dementia as well. Dementia patients often cannot communicate what they want and can get disoriented with frequent hospitalisation. Things like tube feeding can be traumatising. This is where an advanced directive, where the dementia patient can tell in advance what kind of end they want, is of great value. Unfortunately, dementia in India is hardly ever diagnosed in the early stages, where the patients get time to articulate their wishes, write a will, make a treatment plan, or set their legal and financial affairs in order.

“Early diagnosis is very crucial, because if you pick up the symptoms within one or two years, then you can start the treatment,” says Dr Mathew Varghese, senior professor of psychiatry and former head of the department of psychiatry at NIMHANS, Bengaluru. “You cannot reverse the condition, but there are some medicines and psychological interventions like cognitive retraining to slow down its progression. You will also be able to educate the patient and family on what to expect, what to do, and how to manage dementia. According to the ADI, only about 10 per cent of the dementia cases are picked up early in our country. It is a little better in the west. But mostly when people start showing symptoms of dementia, family members attribute it to natural ageing.”


An entry from Geeta’s Facebook blog from December 2019, when her father with dementia was still alive:

Appa: Where does your dad work?

Me: You are my dad. I am Geeta.

Appa: But Geeta is in the US.

Me: We were all together in Farmington Hills. We came back together.

Appa: Are you going to school?

Me: No, I am here to take care of you.

Appa: Ayyo, thank you.

Me: It’s ok. You have done a lot for us.

Appa smiles.

Leela [helper] brings him juice. As soon as she pours the first sip in his mouth, his expression changes to one of ecstasy.

Appa: Amazing taste.

I laugh and ask: Is it good?

Appa: First class.

He tells Leela to give me some.

“I wish I had recorded that moment,” writes Geeta in her blog. “It was so adorable. Feel happy that he still has these moments of joy.”

Dementia can be a heart-breaking and frustrating journey, both for the patients and the caregivers. But maybe, it does not have to be a death sentence. Maybe it is possible to enjoy bits and pieces of the journey, and cherish those moments when they are themselves, and even when they are not. “I refused to consider my parents as people who had nothing left to live for,” says Jaspreet. Sometimes joy is sweeter when it comes from the depths of pain.