Appa was 80 when he began to forget things,” says Meena, the daughter-in-law. “He would go out without his purse, keys, chappals. We took it as old-age forgetfulness.” The first streak of alarm struck when, one morning, he said, “Where’s my coffee? I haven’t had my coffee!” a few minutes after he had had it. Soon he would be asking for food already in his plate, wandering about in the street, standing still in the bathroom. A neurologist attached to the Kilpauk Medical College told them: Appa had full-blown Alzheimer’s disease.
For the family around the person, Alzheimer’s disease (AD) is a heart-breaking reality. “My active, well-educated mom came out of her room one day saying she couldn’t tie her sari. She was 62,” says Padmanabhan, a businessman. “After incidents like forgetting to light the burner and repeated mumbling, we consulted a neurologist at Apollo. We were told diabetic patients did not get dementia.” Her behaviour changed rapidly and a psychiatrist diagnosed it as Alzheimer’s. No cure, said the doctor, and handed him a chart showing milestones in decline.
“We were told people lived for years after the onset, but with mom it was a quick downhill journey,” he says. Within a year, memory loss was total. She couldn’t talk and choked on food. In another six months she took to bed. Her food intake reduced and they didn’t know whether to give her diabetics/BP medication. “She was hospitalised from time to time for IV fluids. At home, we took care of bed sores and indigestion.” The last weeks were devastating. “She didn’t shoo away red ants gathered around her eyes. It’s something I can never get reconciled to. She didn’t live to see her 65th birthday.”Not a part of ageing
With age our brains change, thinking slows down and we occasionally have problems remembering things. But a major make-over in the way our brain works is not a normal part of ageing. It means the brain cells are failing. They do not process and store information well. Plaques containing deposits of a protein fragment called beta-amyloid build up between nerve cells. Tangles form inside the damaged cells. In those with AD, plaque/tangle development is rapid. Experts believe they somehow block communication in nerve cells and disrupt their activities. Currently, AD has no cure. Research is on worldwide to delay its onset, prevent it from developing and find effective treatment. Warning signs
The well-recorded ones begin with memory loss. Caregivers say that people with AD forget recently learned information, begin to forget more often. They have difficulty performing familiar tasks (preparing a meal, making a call), remembering simple everyday words (“that thing I need to brush”), doing complex mental tasks (solving a puzzle or a business problem), putting things in their regular places (wristwatch may go into the freezer); disorientation (getting lost in their neighbourhood), decreased judgment (layers of clothing on a warm day), mood swings and dramatic changes in the personality (suspicious, aggressive); some become extremely passive and sit in front of the TV for hours, for instance. “Neither the symptoms nor the progress rate is the same. The duration of the disease can vary from three to 20 years,” say doctors.The first step
There are treatments and services that can make life better for people living with Alzheimer’s, says Dr. Sanjay Mongia, Consultant Stereotactic, Functional & Gamma Knife Neurosurgeon. “Timely diagnosis will help to make the disease less frightening. You can choose a neurologist who is a good fit for you, access information about medications and support services and sort out your medical, financial and legal needs.” What kind of tests can one expect?
“There is no single test,” says Dr. Mongia. “The medical workup evaluates overall health to identify conditions that affect mind function. The neurologist will interview the person and his family members to gather information about current and past illnesses. He will obtain a medical history of other family members, specially if they have had Alzheimer’s disease or a related disorder.” There will also be a mini mental state exam to test the patient’s awareness of the symptoms, orientation to time and place, memory, ability to follow instructions, do simple calculations.
Doctors will weigh up the person’s sense of well-being. There will be questions on diet, nutrition and use of alcohol, medications — practically a master check-up. This helps to identify other disorders that show symptoms similar to dementia.
Then there is the neurological exam. To assess coordination and balance, muscle tone and strength, eye movement, speech and sensation. The standard workup for AD includes structural imaging with MRI or CT. These images are used to detect tumours, evidence of strokes, damage from head trauma or a build-up of fluid. Am I at risk?
Scientists haven’t zeroed in on one reason why cells fail, but age is a definite factor. The likelihood of developing Alzheimer’s doubles about every five years after 65. After 85, the risk reaches nearly 50 per cent. The risk increases if more than one family member has the illness. AD has been seen in people under 65. Genes are involved too. One Alzheimer risk gene is apolipoprotein E-e4 (APOE-e4). In addition to raising risk, APOE-e4 may tend to make symptoms appear at an age younger than usual. There are also deterministic genes which bring on “familial Alzheimer’s disease”. Currently, doctors don’t recommend routine genetic testing for Alzheimer’s disease. The risk of developing Alzheimer’s or vascular dementia appears to be increased by conditions that damage the heart or blood vessels.
People know very little about Alzheimer’s in India. For us it is forgetfulness, fate or a facet of the ageing process. The family takes care of the person the best way it can. AD is still not recognised as a neurological disorder that can be managed well if detected early. Our public caregiving or medical systems are not prepared to handle such cases. The caregiver’s role
“I wouldn’t say we were deeply traumatised by it,” says Kumar, Appa’s son. “We sometimes had fun with his memory. His major problem was lack of orientation. He couldn’t go out and that irritated him.” The last year wasn’t easy, when all of Appa’s daily activities had to be done for him. “He was like a two-year-old,” says Meena. “I had to mix and feed him food.” What amazed the family was his phenomenal memory of his past. “He recounted incidents like fighting over a pencil in school even when he couldn’t recognise his daughter.”
It is hard work, says Dr. Mongia, but your approach to activities can bring meaning, purpose, joy and hope to the person’s life. When a person finds his mental abilities declining, he feels vulnerable and is in need of reassurance. “Offer support, concentrate on the process, not the result, be patient, be realistic. Start activities related to the individual’s skills, breaking them into simple, easy-to-follow steps. Don’t criticise or correct, but encourage self-expression. Give them every opportunity to make their own choices.”
I’ll leave you with this story. Before Blackwell, a CIA analyst, was diagnosed with Alzheimer’s, his wife and close friends noticed subtle differences in his mood and memory. He went quiet, looked absent-minded, had trouble figuring out the remotes and computer operations. Diagnosis was easier because Blackwell was used to doing complex tasks. Blackwell’s mother and an aunt have AD.
Touching tribute: Judi Dench as Iris Murdoch (right) and Jim Broadbent as John Bayley in “Iris”.
Blackwell takes Aricept. He plays math and language games on his palm-sized computer, travels, reads and goes for international-relations classes.
He has been advised to read aloud. In an interview he said, “I want to beat this thing. I want to help find a cure for me and for my kids and grandkids.” He volunteers for clinical trials. He believes staying physically and mentally active will help stave off dementia. Differences between Alzheimer’s and normal, age-related memory changes
Someone with Alzheimer’s disease
– Forgets entire experiences
– Rarely remembers later
– Is gradually unable to follow written/spoken directions, unable to use notes as reminders, unable to care for self
Someone with normal age-related memory changes
– Forgets part of an experience, remembers later
– Is usually able to follow written/spoken directions, able to use notes as reminders, able to care for selfWhat is the latest?
Sporadic Alzheimer’s disease (AD) is of complex etiology. Neuronal nicotine acetyl choline receptors are found throughout the nervous system. They are now being implicated in the understanding of pathogenic states underlying Alzheimer’s disease, Parkinson’s disease, Schizophrenia and Depression.
CHRNA7 (Alpha 7 nicotinic acetylcholine receptor) gene is mapped to Chromosome 15q13-q14, a region which is linked to several neuropsychiatric syndromes. Decreased á7 Nicotinic Acetylcholine receptor (á7nAchR) expression in the hippocampus and temporal cortex of AD brain have been described. Administration of á7nAchR agonist is beneficial to Learning and Memory. á7nAchR interacts functionally with Aâ42, the consequences of which include blockade of ligand binding site, down regulation of the ERK2/MAPK cascade leading to Memory dysfunction, intraneuronal accumulation of Aâ42, t phosphorylation and neurofibrillary tangles. Hence several á7nAchR agonists and modulators are currently under development for use in the treatment of Memory disorders.
Dr. A.V. Srinivasan, NeurologistIn the movies/ literature
Iris Murdoch, arguably the best novelist of her time, and Nissim Ezekiel the poet were two literary figures who had dementia. In his moving book, Elegy to Iris, John Bayley, her husband of four decades, details her cognitive decline and his sole care of her.
“Iris”, the movie is based on the book. In a heart-wrenching performance, actor Judi Dench takes us through Iris’s loss of touch with reality and trouble speaking and understanding. The most moving scenes in the film show John’s struggle to cope, his hopelessness and frustration as he watches Iris slip away from him, without her ever realising it.
In “Thanmatra”, a brilliant movie by director Blessy, Mohanlal’s Ramesan Nair, a government employee, is jolted by the discovery of AD. How the family copes with it forms the gist of the film.The Indian connection
In recent years, studies have shown that the antioxidant and anti-inflammatory properties of curcumin — the yellow pigment in turmeric — may be powerful enough to break up the amyloid plaques in the brain that contribute to AD. The US Journal of Biological Chemistry reports that researchers found curcumin was able to cross the blood-brain barrier and bind to beta amyloid. This binding effectively blocked amyloid plaque aggregation. UCLA’s AD Research Centre is planning a clinical trial with human subjects to study curcumin as both a preventive and a treatment for AD.
WHO’s regional forum article, Alzheimer’s Disease: Of Emerging Importance, points out a much lower incidence of Alzheimer’s disease in India. Studies in Indian villages, where turmeric is a common additive, found a less than one per cent incidence of Alzheimer’s in people over 65 years of age.
6 months ago