People suffering from Alzheimer’s have dementia and tend to live a futile life in a world of their own, away from reality.
Mukesh is a 75 year old retired pensioner. He was at the helm of affairs in his work place, a dynamic officer, a guiding force for his subordinates and a reliable capable officer for his seniors. He was a pillar of support for his family and his children and relatives relied upon his opinion for many problems which they faced. He worked hard and relentlessly, for more than three decades and then he gracefully retired a decade and half ago. All was well till sometime back when his family noticed that he had started forgetting names of people whom he loved dearly. They did not pay much heed to this until they saw that he started to cocoon himself in his solitude and withdrew into a shell. His family tried to engage him into their daily activities but to no avail. He had started murmuring to himself and stopped responding to their calls. He forgot names, stopped recognising his family and lost his way inside the house. The worst they feared had happened. He was affected with Alzheimer’s dementia.
People with Alzheimer’s dementia are usually sixty five years old or above, seasoned men, women, who have lived an ordinary life, working, earning, rearing up their children and making plans to live happily after they have retired. But gradually things start changing and falling apart for them and their family members. The family notices some warning signs in their behaviour. They notice that these people are unable to comprehend the situations occurring around them, they are not able to figure out what to do in the prevailing circumstances and this was something which was so easy for them to do before. They become incapable of recollecting names or past events, and the most distressing phase comes when they are not able to recognise their near and dear ones. Their personality gradually deteriorates and they move about slowly, sometimes with support, as if lost in their surroundings. Gradually more cognitive decline sets in and their family members are the worst sufferers, because they feel that the dearest person whom they knew, who was so independent previously, is now a complete stranger to them, who does not recognise himself or any of them and needs their support and help for all his daily activities-- all the time.
Often the person keeps repeating and restating things over and again, much to the annoyance of their caregivers. While some of them may get easily irritated and agitated and some may drown deep into the depths of depression. While remedial treatment of such patients is important, it is equally imperative that the family should be educated about what the patient is suffering from. Alzheimer's is a disease which is caused by brain cell death. It is a neuro-degenerative disease, which means there is progressive brain cell death that happens over a course of time. The total brain size shrinks with Alzheimer's and the brain tissue has progressively fewer nerve cells and connections. Therefore it must be understood by the family members and the significant others, that the person is not behaving irrationally due to any frustration or ego conflicts, but due to an aging neuro-degenerative disease. The family, especially the caregivers, need to empathise with the ordeal the patient is going through and not get irritated, stressed or annoyed with him.
Frequently, mere ignorance about the problem, by the family, makes them so angry and agitated that they react rudely with the patient and this makes the situation worse for both, the family as well as the patient. The need of the hour is knowledge, patience, empathy and compassion by the relatives for the patient so that the patient can live a quality life respectfully and with dignity.
To accomplish this, the caregiver should give quality time and care to his own physical and emotional well-being as a priority, and at no cost let his happiness be overshadowed by the prevailing circumstances. Only then will he be able to go the extra mile and deal with love kindness and compassion with his relative who is the patient and who is in dire need of such feelings from his loved ones.
We need to be aware of the symptoms of early onset Alzheimer's disease. It has now been seen that this disease has afflicted the middle-aged people too. Most people with early-onset Alzheimer's develop symptoms of the disease and are found to be in their 40s and 50s. Of all the people who have Alzheimer's disease, about five percent develop symptoms before the age of 65 years. The need of the hour is to be aware of this debilitating disease and try to prevent its onset. Also, the care givers should be able to take good care of themselves while they are looking after their sick family member. The symptoms may vary in form and severity and usually start with some Memory Loss like forgetting common names and things and an inability to use or find the right words and sentences to express themselves. They may have a difficulty in planning and solving problems, something which they use to do so easily before or a difficulty in completing familiar tasks which were so natural for them some years ago. They may start having difficulty in determining the exact time or place, especially in the surroundings they have been living in since last so many years.They may also have difficulty in trying to speak or finding the right words and gradually withdraw into a shell and cut themselves off from the social world. They may start misplacing their items of daily use very often and have difficulty in making decisions even for their daily chores. This may progress to trouble holding urine (incontinence) and an increase in cognitive decline, like complete memory loss and forgetfulness even of their own selves.
Causes and risk factors of Alzheimer’s are quite variable. Chronic stress in our life can ultimately lead us to depression and dementia, say the scientists. A major review of published research suggests that chronic stress and anxiety can damage areas of the brain involved in cognitive and emotional responses like thinking and memory, leading to depression and even Alzheimer's disease. Alzheimer's is a neuro-degenerative disease which is caused by brain cell death which means that there is a progressive brain cell death that happens over time. There are plaques which are found between the dying brain cells, and they are made from a protein known as beta-amyloid. These are the causative and the diagnostic factors which make this disease so debilitating. There is no cure for Alzheimer's disease but there are drug and non-drug options that may help treat symptoms. Understanding the disease and the available options and being aware and taking care, can help the individuals living with this disease and their caregivers to cope with symptoms adaptively and improve their quality of life.
One in three Alzheimer's cases are preventable, says research from the University of Cambridge. The main risk factors for the disease are a lack of exercise-- both mental and physical, high blood pressure, diabetes, smoking, alcoholism, stress, anxiety and depression, poor education and it is also said to be hereditary. If we change our life style, our eating habits, get more physically and mentally active, be stress free, play mental activity enhancing games like solving puzzles, reading and prevent falling into the clutches of the modern life style diseases, we can prevent the onset of this debilitating and fatal disease. The same applies for the care givers who suffer the most with the patient if they do not take precautionary and preventive measures of their own welfare. The need is for them to realise that the patient is not deliberately trying to annoy them with his forgetfulness. At the same time the care givers should not compromise with their quality of life and try to find time for their own needs and recreation. They should be stress free and happy doing what they like doing most, in addition to taking care of their loved ones. Let us love those whom we love the most-- but who seem to have forgotten us.
(The author is a neuro-psychologist, CBSE designated counselor and director of Pari Foundation)
