What can be more ironic and catastrophic when a renowned linguist loses her language altogether,as the deadly Alzheimer’s disease (AD) fiercely ravages her brain? That is what did happen to Alice Howland, a professor and a linguistics expert at Columbia University, New York. Initially, it started with her inability to remember the word ‘lexicon’ while giving a lecture. From then on she forgot how to get back home after taking a run around campus. She went to see a well-known neurologist at the New York- Presbyterian Hospital. Alice was diagnosed with early onset of Alzheimer’s, an irreversible, progressive disease. Her biologist husband and three grown children reacted in different ways to her fast deteriorating condition. Unable to cope with the life changing situation, Alice’s husband takes a job at the Mayo Clinic in Minnesota, on the pretext that he has big medical bills to pay. Ultimately, the youngest daughter, Lydia, an aspiring actress and the rebel in the family gives up her dream and movesback to New York from Los Angeles to become her mother’s fulltime caregiver.
The Alice I am talking about is a fictional character in a 2015 movie called ‘Still Alice’ that I watched last night for the second time. In the movie, the celebrated actress Julianne Moore plays Alice. For her very realistic and touching portrayal of Alice, she took the Oscar trophy home in the best actress category.
Likewise in the real life usually an adult daughter like Lydia often has no choice but to become a caregiver. She has to give up a career and neglect other family duties, her own relationship– because of love, concern, and moral obligation to care for a sick and elderly parent. For any caregiver, it can be overwhelming and a heavy burden to shoulder.In portraying Alice, Moore was able to shine a light on Alzheimer’s and how the burden of this disease finally was dumped on Lydia who had no understanding of this debilitating disease.
Since 2012, the entire month of Septemberof each year is considered World Alzheimer’s Month.This international campaign’s main goal is to raise global awareness, challenge the stigma and misinformation about AD. Globally, the number of people now living with dementia is expected to rise from the current 46 million to 131.5 million by 2050. About 5 million people alone in the United States suffer from Alzheimer’s disease. It is estimated that by 2050, as many as 13.4 million Americans will be affected with this fatal disease.
The Alzheimer’s scenario in Asian countries including India and Bangladesh is somewhat unknown because of stigma surrounding permanent dementia. Dementia in most cases is considered an old age problem and therefore the incidences are not reported. About 4 million people in India have some form of dementia. “An estimated 460,000 people were suffering from dementia in Bangladesh in 2015, and the number is expected to rise to 834,000 in 2030 and 2,193,000 in 2050 respectively.”According to WHO, the government hasn’t given it a priority and there is little awareness about this disease.
A couple of months ago, a Bengali drama that I had watched on You Tube somewhat addressed the issue of dementia. There were some haunting scenes where a grandfather became a diminished figure because of this raging disease. He was mostly left alone in a locked room, isolated, and away from everyone. He was thought to have gone mad because he asked questions repeatedly. Family members didn’t know how to communicate with him and failed to understand that may be he was trying to express a specific thing. Because of the family’s lack of understanding of AD, he became a subject of ridicule where everyone poked fun at his expense.
AD deprives a person of his or her memory, disrupts cognitive abilities and personality. The patients experience mood changes, their day- to- day life become very limited. The disease starts with symptoms like simple forgetfulness: not being able to remember where the car keys are, trying hard to recall a friend’s phone number, after a phone conversation forgetting what the call was all about, or while walking, not sure whether to take a left or a right turn to reach home.Eventually, a complete brain failure kills the patient who has this dreadful disease.
Alzheimer’s is a universal disease and it spares no one. From the former British PM Margaret Thatcher to one of my neighbors had to withstand the challenges of coping with a cruel and absurd ordeal that had no chance of getting easier. The families with Alzheimer’s patients have to endure a nightmarish circumstance and many challenges of coping with this disease. The patient’s new sense of self is an unknown territory for an inexperienced caregiver. Worldwide, most of the caregivers of an Alzheimer’s patient are not trained professionals to care for that patient over a long period of time. There are enormous responsibilities that come with this disease. Sometimes it exceeds the caregiver’s capacity for caring.
Whether one is the patient or the primary caregiver – AD affects every member of a family on some level. With all kinds of drugs and innovative modern medicine, now the Alzheimer patients live longer. This prolongation can be viewed as a blessing or a curse. This memory-robbing chronic disease is indeed one of the hardest to deal with when a patient loses total sense of self. The stress of watching a loved one slowly declining affects everyone in the family.
With Alzheimer’s, a family member has to become a surrogate for the patient. He/she is accountable to make end-of-life decision for the patient. It is like taking care of an infant, from bathing, personal hygiene, preparing meals to spoon feeding and all that is in-between. The caregiver becomes the patient’s life line. All the custodial decisions like medicine, business affairs and putting the person’s overall well-being in order can become very distressing for the caregiver of an Alzheimer’s patient. More often an adult daughter or a spouse hasto see to every need of a patient who doesn’t remember anything.
Faced with such huge responsibility and colossal task, a caregiver herself can become a victim of serious illness. Spending endless hours with the patient, day in day out, the caregiver can develop dementia, according to experts who had done studies. Their alcohol intake increases and some become chain-smokers. They suffer from depression and become ill. They lack exercise because they become housebound in caring for the patient.
A joint study done by researchers of Johns Hopkins University and Utah State University concluded that the spouses of Alzheimer’s patients were six times as likely to develop dementia themselves. They become socially isolated and ignore their own health. They perhaps feel by doing that they become better care givers.
Most families in the United States or elsewhere are not fortunate enough to hire round-the-clock nursing care for an Alzheimer’s patient like the Regans or the Kennedys. In both families they had Alzheimer’s patients. Because of the socio-economic differences the educated and well to do families are in a position to bring this disease to focus and be at the forefront. They also can pay greater attention to their own health and not be a victim to this disease. The less advantaged group can only rely on family. Caring for someone with Alzheimer’s can be a very long, stressful and an intensely emotional journey for a caregiver. Without any support group, an overburdened caregiver may become an invisible victim of this dreadful disease.
The writer is a columnist based in Maryland, USA