Going gently into the night

Living with dementia is a traumatic experience for both patients and caregivers. The writer talks to families who cope with the reality of watching a loved one slip away slowly into a world of forgetting.

October 10, 2015 04:05 pm | Updated 08:26 pm IST

A dementia patient works with Malayalam letters at a therapy centre in Edavanakkad, Kerala. Photo: Thulasi Kakkat

A dementia patient works with Malayalam letters at a therapy centre in Edavanakkad, Kerala. Photo: Thulasi Kakkat

The woman was in her 70s, beautiful, in a maroon Kanjeevaram with diamonds on her ears and flowers in her hair. And she could not stop talking. It was like a dam had burst, as she poured out stories, worries, complaints, mindless of the others, focussed only on the tall, thin man who sat stooped next to her. “See how smart my husband looks. He is very intelligent. He still wants to take all the decisions. But he doesn’t realise that he cannot remember anything anymore. He denies it,” she said.

Everyone in the room looked on quietly. They already knew what she meant. Each of them was there that overcast afternoon because they had a loved one who was sliding quietly away into a grey world of lost memories. Finally, the woman asked, “What will happen if I die first, doctor? Who will look after him?”

Her question poignantly summed up the anxieties and sheer helplessness that dementia brings with it. Dr. Sridhar Vaitheswaran’s seminar that afternoon was meant to help caregivers cope with the demands that dementia makes not just on their time and effort but on their mental strength.

Unfortunately, most dementia cases go unrecognised, dismissed as old age and forgetfulness, tipping patients further down a slippery slope that ends in Alzheimer’s. In India, there are close to 44 lakh reported dementia cases and by 2040, this number is expected to cross a crore.

The crucial link that’s missed is that although dementia occurs mainly in older people, it is not a normal part of ageing. Some amount of forgetfulness can be dismissed, but when it begins to affect everyday living it becomes a problem.

“Forgetting where you left the keys or the purse is common, but only when it begins to have a direct impact on your everyday, independent functioning, it is considered dementia,” says Dr. Vaitheswaran.

Getting help early is crucial because it can slow down the decline, even though the process itself is irreversible. The disease causes nerve cells that connect the different parts of the brain to die, and science has not yet discovered a way to renew them. But doctors use therapy and exercises to kick-start the neurons, and sometimes medication to control extreme depression, aggression, or insomnia.

Sheila Mani’s parents live alone in a second floor flat. Her mother is 82, her father 83. Till three months ago, Sheila and her father knew that her mother’s memory was failing but they thought they could cope. Then in June, when her father was bathing, her mother wandered out of their flat and reached the first floor, lost and bewildered, till a neighbour alerted Sheila, who fetched her back. “Till May, my mother was cooking. From June, the decline has been rapid,” said Sheila, “She became depressed and we had to get psychiatric help.”

Help varies with the stage of illness. It could include skill building, psychotherapy, group interventions, psycho-education, and counselling for the patient. And training, awareness building and support groups for the caregiver. Most important, it is important that families talk about it. For instance, Sheila has told the neighbours about her mother so that they can keep an eye on her if she wanders away again. In some cases, doctors advise that patients wear a small tag with their name and address on it.

But primarily, what’s needed from caregivers is an understanding of what the disease does to a person. Making a cup of coffee, for instance, requires five different parts of the brain to fire together, each addressing a different aspect of the task. From deciding to make coffee to moving hands and legs; from recognising sugar from salt to measuring milk into cups; from remembering the sequence of actions to actually naming it as coffee — each act comes from a different bit of the brain. And when these bits cannot connect, the coffee can’t be made.

Dementia patients often face irritation and impatience from caregivers who can’t imagine how the efficient person they knew can forget the simplest things. Gomathi, 51, takes care of her 82-year-old mother-in-law who has dementia. “She would leave the water tap open and we would shout at her. She would forget she had eaten and ask for food again within minutes. She would refuse to bathe and would not respond when we spoke. We became angry, impatient. Only now we have understood what’s actually happening to her.”

The loss of short-term memory is sometimes accompanied conversely with a deep regression into the past. Gomathi’s mother-in-law would insist each evening that she had to make coffee for her long-dead husband; at night she would ask for her babies to be put to sleep next to her. With regression comes anxiety and anger, stemming from the frustration of living in a world that nobody appears to understand. Dr. Vaitheswaran described a woman who was docile all day but at 4 each evening, she would want to leave the house. When restrained, she became angry, even aggressive. After many sessions of counselling, they found that the woman used to bring her child home from school at that hour. Now reliving those years, she was filled with anxiety that her son was waiting and she was being prevented from going to him. The simplest thing, said Dr. Vaitheswaran, was to let her leave the house and take her for a walk. In a while, she forgot why she was out and returned home quietly.

Love, it’s been said, is about shared memories. And life is a chain of remembered actions. With fading memories, these links break. Dementia patients forget the words with which to identify objects and tasks, forget the faces and why they used to love them, forget why and how to bathe or button up a shirt.

Families can only help by going easy, staying aware of how the disease is eating away the brain, and help normalise the situation. “Follow old routines as far as possible, help them stay active. Let them shell peas, peel potatoes or sort out groceries into storage jars,” says Dr. Vaitheswaran. The idea is keep the grey cells ticking as much as possible.

Watching her mother struggle to cope, Sheila says, “She has become like a baby. But we don’t call it a problem. We call it a challenging time. And my father and I have learnt to cope.”

Keeping it at bay 

Anything that's good for the heart is good for the brain. A well-balanced diet, regular exercise, and a healthy lifestyle are the first things to follow. Patients with high blood pressure, diabetes and heart disease are at high risk, so managing these diseases appropriately goes a long way in preventing dementia. Avoid smoking and moderate your alcohol consumption. Stay involved in group activities. And keep the brain active with activities like crosswords, gardening, books, quizzes, wordplay, music and more. 

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