I hadn't the slightest clue about Alzheimer's Disease until it struck home. My elderly father was afflicted by the disease, displaying symptoms soon after his retirement. He began forgetting mundane things and started slipping into depression. At times he would sit all by himself and cry like a child. When we sat beside him and held his hand, he felt reassured. We didn't realize that there was something more to the apparent bouts of depression and forgetfulness. Then, one day, my father got lost in the park, an area he knew like the back of his hand. That wasn't the only instance. We soon realized that that something was quite amiss: the specialist defined it as Alzheimer's Disease. Within months my handsome, well-dressed father looked lost and forlorn. His memory shrank with each passing day. In effect, this is what Alzheimer's roughly all about: shrinkage of the memory cells and consequent degeneration - noticeable during any physical activity.
According to the booklet provided by the Delhi Chapter of Alzheimer's & Related Disorders Society of India (ARDSI): "Alzheimer's Disease (AD) is a progressive, degenerative disease that attacks the brain and results in impaired memory, thinking and behavior. Symptoms of AD include a gradual loss of memory, decline in the ability to perform routine tasks, disorientation with regard to time and space, impairment of judgement, personality change, difficulty in learning and loss of language and communication skills. As with all dementias, the rate of progression in Alzheimer's patients varies from case to case."
This incurable, degenerative, and terminal disease is generally diagnosed in people over 65 years of age. An estimated 26.6 million people worldwide were afflicted with Alzheimer's in 2006; this number may quadruple by 2050. However, there is no evidence that women are at an increased risk than men. The earliest observable symptoms are often mistaken to be 'age-related' concerns, or manifestations of stress. Alzheimer's develops for an indeterminate period of time before becoming fully apparent, and it can progress undiagnosed for years. And because it is degenerative, the management of patients is of utmost importance and here the role of the caregiver becomes extremely crucial.
Appropriately, the ARDSI booklet offers a series of dos and don'ts for the caregivers. Veena Sachdeva, senior counsellor, ARDSI Delhi chapter, explains, "We sensitize the caregiver and explain why the patient is behaving in this way and how he or she ought to be handled. Foremost on our list is to do away with the myth that this disorder has something to do with 'pagalpan' (madness). It isn't any sort of madness. The patient has to be handled with a lot of care and love. The role of the caretaker is so crucial that we say that the actual victim of the Alzheimer's is not the patient but the caregiver, because the patient isn't really aware of what's been happening and is solely dependant on the caregiver."
For those struck by this disorder are rendered helpless, often behaving like children despite being in their 60s or 70s. In such a situation, the best caregiver is one among the close family - children and, in particular, the spouse. Those who can afford extra care, should engage a nurse or a care taker trained to treat the patient with sensitivity and utmost care. Gita Das, a volunteer with the ARDS, elaborates, "We tell the caregivers that the patient has to feel secure, wanted and loved. We have two help lines - 26922940 and 64533663 - and we keep getting calls from caregivers. We even pay house visits, explaining how best to bathe and look after the patient. Different patients react differently. Some get aggressive, most don't react at all, but each one of them has to be treated with great sensitivity and respect."
Ironically, when the disorder afflicts the elderly, more often than not the care-giving spouse is also elderly. Of course, women are definitely able to care better for their husbands. But there are fine examples like an elderly, New-Delhi-based gentleman, K.C. Khanna, who cared for his afflicted wife with tremendous understanding and commitment. A retired executive, he had hired help on account of his own age but was always there by his wife's side. Khanna, who sadly passed away recently was, in fact, one of those instrumental in setting up ARDSI that offers advocacy, a helpline, home visits and a memory clinic - all free of cost.
The role of the caregiver is so crucial that many a time, especially in the initial stages, he or she might even cover up the small memory lapses of the spouse. Explains Veena Sachdeva, "Until the spouse is around, things are still okay. The difficult phase starts with the death of the spouse. My own mother was struck by AD and my father looked after her. After his death, my brother and his family are the caregivers."
It is very painful to see your parent reduced to behaving like a small child and, often, not being able to recognize close family members. Sometimes they are unaware of what's going on around them or they may not be bothered about things they had once taken for granted, like eating or bathing.
With increasing life expectancy, there is a greater need to talk about Alzheimer's. Most people do not feel comfortable about sharing what is undoubtedly an extremely painful experience for the family. There are a few exceptions, though, like Ritu, the daughter of K.C. Khanna. Says she, "When I came down to live with my parents in 1997, my mother had already been struck by the disease (she passed away in 2001). Initially, the entire burden of looking after her fell on my father. There was a tremendous financial burden as well as we had to hire help."
Recalling the first stages of her mother's condition, Ritu recalls, "It started with forgetfulness. She had problems with counting money. Then she had problems with vocabulary. She was aware that there was something wrong and yet she couldn't do much about it. Then there was further deterioration - she'd look at a cake of soap and wonder what to do with it. There were mood swings, she ranged from being docile to very aggressive. Then there were phases when nothing affected her. During power cuts, we'd all be complaining about the heat and the mosquitoes, but she didn't seem to be bothered at all."
Ritu, too, emphasizes the need for "a lot of caring and emotional support". Other than interaction with other caregivers, going through 'A Guide To Caring' - a detailed manual on just how to offer such care brought out by the ARDSI - would prove beneficial. The guide provides insights into what to expect in the advanced stages of the disease.
While there is no definite cure so far, the loving support of the family and life in familiar surroundings are therapeutic for the patient. For the caregiver, joining an Alzheimer's society could prove helpful. It could be a source of great strength in a period of coping that is often distressing and is always lonely.